Working for a living?: Employment, benefits and the living standards of disabled people 9781847425188

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WORKING FOR A LIVING? Employment, benefits and the living standards of disabled people Helen Barnes

The •POLICY

PP P R E S S

First published in Great Britain in October 2000 by The Policy Press University of Bristol 34 Tyndall’s Park Road Bristol BS8 1PY UK Tel no +44 (0)117 954 6800 Fax no +44 (0)117 973 7308 E-mail mailto:[email protected] www.policypress.org.uk © The Policy Press, 2000 ISBN 1 86134 186 5 Helen Barnes is a Research Fellow at the Policy Studies Institute. The right of Helen Barnes to be identified as author of this work has been asserted by her in accordance with Sections 77 and 78 of the 1988 Copyright, Designs and Patents Act. All rights reserved: no part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise without the prior written permission of the Publishers. The statements and opinions contained within this publication are solely those of the author and not of The University of Bristol or The Policy Press. The University of Bristol and The Policy Press disclaim responsibility for any injury to persons or property resulting from any material published in this publication. The Policy Press works to counter discrimination on grounds of gender, race, disability, age and sexuality. Cover design by Qube Design Associates, Bristol Front cover: Photograph kindly supplied by Mark Simmons Photography, Bristol Printed in Great Britain by Hobbs the Printers Ltd, Southampton

Contents

Acknowledgements

iv

Introduction

v

one

Disability policies and the citizenship rights of disabled people

1

two

Disability and welfare state regimes

19

three

Employment and working life

35

four

Benefits, personal assistance and living standards

61

five

Conclusion and policy implications

97

References

115

Appendix: Methods used for the research

137

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Working for a living?

Acknowledgements Sincere thanks to the Social Policy Research Unit at the University of York, which funded this research by means of a doctoral studentship, and especially to John Ditch, my supervisor. Thanks also to the University of North London for funding work on the manuscript. Many organisations and individuals provided information, and I am grateful to them all, especially Susanne Berg, Sylve Hannson, Bjarne Almström and Johan Sjögren. Most of all, thank you to my family and friends for their support. The BHPS data used were made available through the ESRC Data Archive. The data were originally collected by the ESRC Centre on Micro-Social Change at the University of Essex. Neither the original collectors of the data nor the Archive bear any responsibility for the analyses or interpretations presented here. The German data used are from the public use version of the German Socio-Economic Panel. These data were provided by the Deutsches Institut für Wirtschaftsforschung. Robert Eriksen and Magnus Bygren at the Swedish Institute for Social Research provided access to the Swedish Level of Living Survey. Neither the Deutsches Institut für Wirtschaftsforschung nor the Swedish Institute for Social Research bears any responsibility for the analyses or interpretation of the data they supplied. I am grateful to two anonymous reviewers for their comments, and to Dawn Rushen at The Policy Press for her patience and efficiency. Any remaining errors or omissions are my sole responsibility.

iv

Introduction This book is concerned with the extent to which social policies, particularly labour market and social security policies, enable disabled people to participate in the ordinary life of their communities. It will argue that both the objectives and implementation of social policies play a crucial role in securing, or failing to secure, the integration of disabled people, by determining the level of income and material wellbeing which can be attained, and by affecting access to, and levels of autonomy within, valued social roles. These include not only employment, but also personal relationships and a range of social and political activities. Disability policies are compared across three countries, Sweden, Germany and the UK, which have contrasting models of welfare state provision, with a twofold aim: to compare the living standards resulting from differing combinations of policy and to assess existing welfare state typologies (such as those of Esping-Andersen, 1990; Castles, 1993) against an analysis of the situation of disabled people, in the same way as has already been done using policies affecting women (Lewis, 1992; Shaver and Bradshaw, 1993; Sainsbury, 1994, 1996). The wellbeing of disabled people is determined partly by access to the labour market, and by cash benefits, but may also depend on both the level and form of service provision, which is not fully taken into account in many existing comparisons of welfare states (although there are exceptions, including work by Alber [1995], Walker et al [1993] and Anttonen and Sipilä [1996], which begin to assess the importance of social service provision in comparing welfare states). These issues are discussed in a context where welfare spending has been severely curtailed by economic pressures, and where political movements led by disabled people themselves have created a new impetus for social policies in response to their needs, including a renewed focus on the role of employment. If social policies are, as has been argued, ‘disabling’ in their effects (Barnes, 1991), to what extent is this inevitable, or can policies be designed which respect the autonomy of disabled people while continuing to meet other objectives, such as maintaining work incentives and remaining within public spending limits? The research is concerned with three specific questions: • Whether or not disabled people have worse living standards than non-disabled people in all three countries. Although material living

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standards are considered, using both income measures and nonmonetary indicators of deprivation, the concept of living standards adopted is broader than this, and includes measures of satisfaction with work and life, and levels of social and political activity. It is concerned to identify the barriers which may prevent disabled people enjoying the same living standards as their non-disabled peers, recognising that in a physical and social environment which so often excludes them, income alone may not guarantee the ability to participate in society (Zarb and Oliver, 1993). • How important paid work is for the well-being of disabled people, and whether its importance is solely financial or has a broader impact on the quality of life. Levels of part-time and full-time employment among disabled and non-disabled men and women are compared, and the benefits and rewards of work are examined, not only in financial terms, but by comparing the quality of the work environment, and levels of satisfaction with various aspects of work, and by exploring the links between participation in paid employment and participation in wider society, through social and political activity. • Third, the research asks whether the disability policies adopted in each country, and their outcomes for disabled people, are consistent with existing classifications in welfare state typologies, or whether they suggest modifications to their position, and therefore represent a contribution to the literature on welfare state regimes.

Methods and countries The countries selected were chosen as representative examples of contrasting welfare regimes, in order to test whether an analysis based on disability resulted in similar conclusions to classifications based on other indicators such as aggregate welfare spending, indices of decommodification (Esping-Andersen, 1990) or the position of women (Lewis, 1992; Shaver and Bradshaw, 1993; Sainsbury, 1994). A combination of methods was used, in an attempt to obtain an understanding of how the range of disability policies operates in each country. Documentary evidence from the three countries formed the basis of the analysis of disability policies. This was supplemented by a series of interviews for Sweden, and by discussion with national informants for a related project on partial capacity benefits (Thornton et al, 1997) for all countries. Typical situations were used as ‘vignettes’(Finch and Mason, 1993; Millar and Warman, 1996) to establish how policy responses to

vi

Introduction

disability vary with an individual’s age, their age at onset of disability, work experience, family situation and personal care needs. Outcomes for disabled people were also modelled using secondary analysis of survey data. There was no suitable data set available for the three countries, so three discrete surveys were used for the analysis; the Swedish Level of Living Survey (ULF), the German Socio-Economic Panel (GSOEP) and the British Household Panel (BHPS). All of these surveys provide information on a range of economic and social factors at both the individual and household level. Because of the nature of the data used, it is not possible to provide entirely congruent crossnational comparisons at the micro level; definitions of income, employment, and so on vary between the three surveys used. The research does, however, provide an analysis of the relative position of disabled and non-disabled people in each country, and enables cross-national comparisons of the outcomes for disabled people to be made at an aggregate level. Comparative research on disability issues is relatively sparse. There have been studies which have looked at the economic effects of disability benefits, particularly in terms of the ways they influence retirement patterns (see, for instance, Kohli et al, 1991) and there has been much recent interest in comparing employment policies (Lunt and Thornton, 1993; Thornton and Lunt, 1997) and related social security policies (Thornton et al, 1997). There have also been some comparative studies of social care provision (see, for instance, Munday, 1992; Evers et al, 1994; Ungerson, 1995). What all of these studies have in common is that they are largely accounts of policy inputs at the macro level, and discuss outcomes by reference to key trends in population behaviour. By contrast, studies of outcomes based on micro-data, such as those concerning income dynamics or the effects of transfers on households’ incomes (such as Smeeding et al, 1990; Mitchell, 1991), have tended to exclude disabled people, largely because of the definitional problems involved. What has not so far been attempted is a study which assesses the combined effects of the various programmes for disabled people, compares these cross-nationally, and attempts to relate these to the living standards of disabled people as revealed by an analysis of household surveys. The research presented here represents such an attempt and has both the strengths and limitations of an innovative approach to an established issue. On the one hand, it provides new evidence about the lives of disabled people in the three countries studied; on the other, it bears witness to the methodological complexity of the task in being

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unable to provide a refined level of comparability across all the issues studied.

The time frame The quantitative analysis is based on survey data from 1991; this was the only year for which contemporaneous data from all three countries was available, and the most recent for Sweden, which undertakes its panel surveys only at infrequent intervals, rather than annually. Although this is now some time ago, comparison with recent official statistics on the labour market participation of disabled people in the three countries does not appear to suggest that the broad findings are invalidated by the passage of time; if anything the position of disabled people has become rather worse, owing to the worsening economic climate in Europe as a whole (Sly, 1996; Thornton and Lunt, 1997; Thornton et al, 1997). However, as the description of disability policies is based on the most recent information available, there is some mismatch between the outcomes as revealed by the analysis, and the policies to which these may be attributed, and this should be borne in mind when considering the results. For instance, the data does not reflect the passage of antidiscrimination legislation in Sweden and the UK, or take account of recent changes in the provision and funding of personal assistance in Sweden. However, the research overall seeks to bridge this gap by describing typical outcomes taking into account both the implications of recent policy developments and the results of the survey analysis.

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ONE

Disability policies and the citizenship rights of disabled people Introduction The disability politics of the last 20 to 30 years have been described as the last civil rights movement. Disabled people have rejected the damaging stereotypes of passivity and dependency which have underpinned so many forms of welfare provision in favour of new models of independent living which emphasise personal autonomy. In common with other groups, such as immigrants, women, and those who are poor (Held, 1989; Lister, 1990; Roche, 1992), disabled people have argued that a failure to guarantee their rights results in an imperfect, ‘secondclass’ citizenship (Barnes, 1991; Oliver, 1996). This poses a challenge to policy makers, particularly those concerned with income maintenance, employment and personal assistance, but recent political emphasis on civil rights for disabled people has tended to overshadow debate about how welfare provision can be reformed to fulfil the social citizenship rights of disabled people and enable their equal participation in society. The research presented in this book compares disability policies and the standard of living experienced by disabled people in three countries: Sweden, Germany and Britain. It considers their economic situation, and investigates whether disabled people in each country are able to lead the same kind of lives as their non-disabled peers in terms of access to employment, income and social life. It identifies examples of good practice, makes recommendations for changes to existing policy and practice, and highlights areas where further research is required. This first chapter begins by exploring the concepts of disability, citizenship and independence, which will provide the framework for later analysis.

The ‘social model’ of disability The way in which disability is defined influences both the way in which disabled people construct their identities, and the way in which they are perceived by others (Scott, 1969; Stone, 1984; Gartner and Joe, 1987).

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Working for a living?

It also determines the type of policy provision made for disabled people. The reconceptualisation of disability has been important in changing both attitudes and policies. Historically, definitions of disability have been created within medical and administrative contexts to distinguish between those deemed capable of undertaking work in the market and those deserving of state assistance (Stone, 1984). Medical approaches to disability emphasise functional impairments, whereas economic approaches focus on vocational limitations, but both imply that there is a deficiency in the individual which must be made good. By contrast, the redefinition of disability as the product of a relationship between an individual and their environment locates both problem and solution in the realm of public policy. The present form of architectural structures and social institutions exist because statutes, ordinances or codes either required or permitted them to be constructed in that manner. These public policies imply values, expectations, and assumptions about the physical and behavioural attributes that people ought to possess in order to survive or to participate in community life ... characteristics of the environment that have a discriminatory effect on disabled citizens cannot be considered simply coincidental. Rather than reflecting immutable aspects of an environment decreed by natural law, they represent the consequences of prior policy decisions. (Hahn, 1988, p 40)

The first widely accepted attempt to distinguish between the natural and social consequences of physical impairment was the definition developed by the World Health Organisation, which distinguishes between impairments, disability and handicap (Wood, 1981): Impairment: Any loss or abnormality of psychological, physiological or anatomical structure or function.

2

Disability:

Any restriction or lack of ability (resulting from an impairment) to perform an activity in the manner or within the range considered normal for a human being.

Handicap:

A disadvantage for a given individual, resulting from an impairment or disability, that limits or prevents the fulfilment of a role (depending on age, sex, and social and cultural factors) for that individual.

Disability policies and the citizenship rights of disabled people

This definition was hailed as a conceptual breakthrough, because of its analytical separation of physical impairment from social disadvantage. However, it continues to locate disability in the individual by assuming a causal link between the inability to carry out certain physical functions (‘disability’) and the inability to fulfil accepted social roles (‘handicap’). What has become known as the social model of disability was originally developed by Disabled Peoples International, a network of organisations run for and by disabled people themselves. This model is based on a twofold definition (UPIAS, 1976): Impairment: The functional limitation within the individual caused by physical, mental or sensory impairment. Disability:

The loss 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.

This redefinition of disability by the disabled people’s movement has been of vital importance. Scotch (1988) argues that the development of an inclusive definition of disability was a crucial step in the evolution of disability as an issue for social movement politics. As Meehan (1993) has argued in respect of women, such ‘social space’ is a prerequisite for the realisation of citizenship rights. In terms of disability policies, locating disability in society, and in particular social arrangements, shifts the focus away from the individual and changes the nature of the policy response required, which has, until recently: … been oriented toward income maintenance and minimal rehabilitation of disabled people, rather than toward removal of the causes of disability, removal of structural barriers to the employment of disabled people, or integration of disabled people into the mainstream of society. (Erlanger and Roth, 1985, p 320)

The social model of disability has been debated intensely both within and outside the disability movement. It has been argued that the simplicity of the definition fails to take account of other factors, such as race (Stuart, 1992), gender (Morris, 1991), and sexuality (Hearn, 1991; Shakespeare et al, 1996). Several critiques have centred on the fact that the social model appears to deny the experience of impairment itself:

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There is a tendency within the social model of disability to deny the experience of our own bodies, insisting that our physical differences and restriction are entirely socially created. While environmental barriers and social attitudes are a crucial part of our experience of disability – and do indeed disable us – to suggest that this is all there is to it is to deny the personal experience of physical or intellectual restrictions, of illness, of the fear of dying. (Morris, 1991, p 10)

Shakespeare (1992), French (1993a) and Crow (1992) are among those who have argued for a refinement of the social model to incorporate the experience of impairment. While recognising the need for a parallel social model of impairment, Oliver (1996) argues against its incorporation into disability theory, as, in contrast to socially created disability, effects caused solely by impairments, such as pain, cannot be removed by societal change. The social model presents challenges for both the development and the analysis of disability policy, many of which are currently unresolved. Policies which relate to income maintenance, employment and personal assistance are largely geared to meeting individual needs, and do little to address societal barriers. They also tend to be concerned with the specific circumstances of an individual’s impairment. The analysis of disability policies using the social model as a framework is both conceptually and methodologically complex, and there has so far been only one major sustained attempt to operationalise it within social research, which has encountered a number of difficulties (Zarb, 1992, 1997). The continuing explanatory power of impairment, as well as societally created disability, in accounting for the situation of disabled people, also raises conceptual and methodological issues.

Citizenship rights and disability The redefinition of disability has taken place alongside debates about the nature of welfare citizenship, and in a context where commitment to welfare spending has been undermined both by the perceived fiscal crisis of the welfare state (Mishra, 1984) and by the dominance of neoliberal ideology, particularly in Britain (Pfaller et al, 1991). This has had contradictory effects. On the one hand, debates about citizenship have provided a conceptual framework for disabled people to articulate their experiences of disadvantage and discrimination. Neo-liberal discourses about individualism, independence and autonomy, together with the privatisation of welfare services, have allowed the development of

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Disability policies and the citizenship rights of disabled people

innovative services, and created a climate of support for antidiscrimination legislation. At the same time, cuts in existing welfare provision and increasing diversity in the availability and cost of services have made it harder for some disabled people to participate in society. Contemporary discussions of the concept of citizenship take as their starting point T.H. Marshall’s well-known (1950) essay, which presents citizenship as consisting of three interdependent sets of rights: political, social and civil. Roche (1992) argues that the assumption of a citizenship based on national identity and an industrial society is increasingly inadequate to deal with a society characterised by increasing complexity and diversity, and identifies three key weaknesses in the dominant paradigm. First, the neglect of gender issues, and the implicit assumptions of the role of the family are identified as problematic. Second, it is argued that a failure to specify the duties expected of a citizen has created a moral vacuum which Right-wing theorists have been only too ready to fill. Third, and specifically in relation to the substance of social citizenship rights, he argues that these have been depoliticised by their status as a distinctive form of rights, leading to large amounts of power being vested in welfare bureaucrats. While different elements of citizenship may be emphasised by commentators from differing political and theoretical perspectives, the concept is essentially concerned with the nature of social participation of members of a community (Turner, 1986). As Oliver (1996) has argued, disabled people do not enjoy equal civil rights when they live in residential accommodation where they are denied the basic rights of assembly and action, when the legal rights which they do have are not effectively enforced, or when they have no legal redress against systematic acts of discrimination (Oliver, 1996). The right to participate in political life may be restricted by problems of physical access to meetings and to polling stations, by a failure to make information available in the appropriate forms, by the omission of disabled people from registers of electors, and by their underrepresentation in elected assemblies (Barnes, 1991; Oliver, 1996). Disabled people cannot be said to enjoy the same social rights as their nondisabled peers if they are more likely to be poor, if they are unable to use public facilities with the same ease as other citizens, or if they are unable to fulfil the lifestyle expectations of their contemporaries (Statistics Sweden, 1992). This includes employment, accommodation, social activities and, at an even more fundamental level, such basic rights as deciding when and whether to eat, engage in sexual relations, wash and sleep (Ratzka, 1986; Barnes, 1992; Oliver, 1996).

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Individuals may be excluded from the life of their society because they lack either the resources to participate or the opportunity to do so. For disabled people, this involves not only income, but issues of physical access and exclusion as a result of discriminatory attitudes. In developing a framework of basic needs, Doyal and Gough (1991) argue that:“To be denied the capacity for successful social participation is to be denied one’s humanity” (p 184). They posit four universal social roles: production, reproduction, cultural transmission and political authority, from which an individual cannot be excluded without damage to his or her potential for self-actualisation. Doyal and Gough further distinguish between ‘participation’ in a society and ‘critical autonomy’, which entails the ability not only to evaluate critically the rules of a particular culture, but to reject or move beyond them if necessary to achieve selfactualisation. Our analysis will explore the role of production (in the form of paid employment) in enabling disabled people’s wider participation in society, and thus its importance in guaranteeing citizenship rights. However, bearing in mind the argument that autonomy may be threatened by unmanageable conflict between different social roles as well as by exclusion from one or more of them, it will also explore the possibility that involvement in paid work may have negative consequences for disabled people. As commentators on the Right (Mead, 1986) have highlighted, citizenship implies not only a bundle of rights, but a corresponding bundle of obligations. Therefore, the decision to exempt or exclude a person from a particular duty or obligation may also be seen as limiting the scope of their citizenship rights. This arises in respect of a number of issues such as the criminal law, voting, and the requirement to pay certain taxes and fees. These types of exemptions are seen as damaging to the interests of disabled people: The independent living movement rejects the behavioural expectations created by both the sick role and its derivative, the impaired role, by saying that the disabled do not want to be relieved of their familial, occupational and civic responsibilities in exchange for a childlike dependency. In fact this ‘relief ’ is considered tantamount to denying the disabled their right to participate in the life of the community and their right to full personhood. (DeJong, 1979, p 141)

For disabled adults of working age, the exemption from the requirement to work (both in terms of general social expectations and, more narrowly,

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Disability policies and the citizenship rights of disabled people

in relation to social security benefits) is a significant marker of citizenship status. Citizenship does not merely consist of a legal status, but of the means necessary to fulfil social roles, as Barbalet (1988) has argued: The issue of who can practise citizenship and on what terms is not only a matter of the legal scope of citizenship and the formal nature of the rights entailed in it. It is also a matter of the non-political capacities of citizens which derive from the social resources they command and to which they have access. (Barbalet, 1988, p 1)

As has been argued in respect of poor people in general (see, for instance, Murdock, 1986; Lister, 1990), social rights to an adequate standard of living are an essential prerequisite to the exercise of political rights by disabled people. Legal rights are equally essential to enforce social rights; claims to income maintenance or service provision are worthless unless they are supported by an effective and equitable system of appeals (Dean, 1996). In turn, political rights are necessary in order to secure legal and social rights (Marshall, 1950). Resources are frequently taken to mean income and assets. Donnison (1975) argues for the recognition of education, health care and rights to such services as a new and significant form of property. Held (1989) has similarly argued for the inclusion of reproductive rights as citizenship rights. Social status, political power and security are also resources in this sense. In considering the range of resources required for disabled people to participate in social, economic and political life, a broad definition of resources will be adopted, including not only economic resources, but also such resources as time, information, legal rights, personal assistance and social relationships. This is important because, while disabled people do face many economic obstacles to participation, at least some of the barriers they encounter are not dependent on income. Zarb and Oliver’s (1993) study of people ageing with a disability found that many reported having enough money for their needs but were unable to obtain the other resources they needed because the relevant services or facilities were not available. Similarly, Berthoud et al (1993), in researching the economic problems of disabled people in Britain, found that social participation was related to income to a certain point, but beyond this was more affected by severity of disability, suggesting that social participation requires changes in other policy areas. In considering the role of social security and employment policies, therefore, it is important both to take account of their impact on the availability of

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other resources, and to have a realistic understanding of the limits of their scope for improving the situation of disabled people. Coleman (1971), in considering the resources which are necessary to achieve social change, developed the following list: • • • • • •

community family personal legal and legislative economic political.

He highlights the ways in which the effectiveness of any resource is dependent on other resources. Family resources are seen as supplementing personal resources (such as drive to succeed) and community resources (such as mutual trust and information). The effectiveness of legal rights is circumscribed by the range of other resources available. While our focus is more concerned with individual requirements, the range of resources remains similar. Coleman argues that the most important sources are income (in particular, relative economic power compared to members of the same society) and occupation (employment and its associated self-esteem), both of which also maximise the opportunities for autonomous choice. This highlights the centrality of employment and income maintenance policies in enabling the effective participation of disabled people. In addition to resources, as noted above, an individual also requires opportunities to participate. Coleman (1971) describes as ‘arenas’ those spheres in which an individual has the opportunity to make use of his or her resources, such as occupation, school, family or political group. This distinction is a useful one; policies may be intended to affect resources or to change the functioning of arenas. For example, it is possible to improve the incomes of disabled people by raising benefit levels or tax allowances, or improving rates of employment and/or rates of pay. These increased incomes become in their turn an increased or new form of resource. Coleman (1971) refers to this process as the ‘conversion’ of assets. The same point was expressed by Marshall (1950) in arguing that the growth of citizenship was fostered both by the struggle for citizenship rights and by their enjoyment once won. Legal rights are argued to constitute a particular type of resource, in that they have the power to directly affect the operation of arenas, facilitating the conversion process. For instance, anti-discrimination law can bring a

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Disability policies and the citizenship rights of disabled people

disabled person into arenas, ranging from the local cinema to the labour market, which would otherwise have remained closed to them. Such laws are themselves contingent upon participation in the political process in order that the interests of different groups are represented. Disabled people have too often had their needs and resources defined by professionals and academics (Ellis, 1993; Morris, 1993; Carpenter, 1994), and it is therefore essential to look to definitions of necessary resources which have been produced by disabled people themselves. The Derbyshire Independent Living Team lists the ‘seven needs’ of disabled people as follows (Swain et al, 1993): • • • • • • •

information access housing technical aids personal assistance counselling transport.

The typology of resources developed by Zarb and Oliver (1993) in a discussion about the requirements for enabling service provision is more abstract in its conclusions (see Table 1). Despite these differences of emphasis, there is a degree of consensus about what is required for autonomous living, including control over personal assistance, an adequate income, and choice about where and with whom to live. The resources available to an individual are not, of course, determined solely by their individual situation, but by that of the community in which they live. An individual lacking resources is further disadvantaged if they live in an area or community where others are also without resources (Donnison, 1994). Such ‘resource poverty’ is not necessarily Table 1: Resources for a supportive environment Disabling services dependency

Building blocks information

Supportive environment independence

fixed options discretionary services reactive

knowledge confidence personal support

choices rights and entitlements proactive

service-led support anxiety partial solutions

financial resources recognising difference empowerment

user-led support security creative solutions

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Working for a living?

spatial; members of minority groups who are marginalised and excluded from participation in wider society may also have their existing disadvantages compounded. Thus a disabled person whose main interactions are with other disabled people facing the same kinds of economic and social barriers has fewer material resources at their disposal than one who has social contacts among a wider group (Engberson, 1993; Room, 1995; Paugam, 1996). Paradoxically, however, the concentration of deprivation may simultaneously offer the resource of political cohesion and shared aims (Coleman, 1971, 1990; Donnison, 1975). Despite an increasing trend towards individualisation in social and political life, it is noteworthy that much of the current political visibility of disabled people in Great Britain is attributable to their cohesion as a political group (Scotch, 1988), whereas the relatively more generous provision in Sweden does not appear to have fostered a similar degree of activism (Hurst, 1995).

Economic resources For disabled people, as for other people, access to employment is the main determinant of economic resources (Statistics Sweden, 1992; Berthoud et al, 1993; Burkhauser and Daly, 1993b). However, many disabled people, particularly in Britain, are not in employment and rely on social security benefits as their main source of income (Martin and White, 1988). Social security benefits are now generally accepted as part of the citizenship contract between the state and the individual, enabling the realisation of citizenship rights by continued participation in the normal life of society (Twine, 1994). This has not always been the case. For instance, until 1948, British Poor Law explicitly linked receipt of means-tested benefits to loss of citizenship rights (Marshall, 1950). Although this precise link between benefits and citizenship no longer exists, receipt of social assistance remains a stigmatising experience in many countries. The adequacy of social security benefits in meeting the costs of disability may constrain their ability to function as an effective resource. Social security policy also has major implications for independent living. Benefits in respect of personal assistance needs may define certain activities as essential, and therefore eligible for benefit, while other activities are seen as optional, regardless of the disabled person’s personal priorities. Social security policy is also an important factor influencing choices about employment and household formation; there is little incentive to take paid employment if financial gains are minimal and if

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Disability policies and the citizenship rights of disabled people

the risk of losing entitlement to benefit is added to the risk of the job not working out. The assumption that a disabled person with a partner can rely on them to provide personal assistance may undermine individual choices. In addition, the withdrawal of social security benefits when a person enters paid work also makes it difficult for them to achieve allround participation, as there is little recognition of the continued costs of disability. The more integrated people with disabilities are in normal social and economic life, the more they will incur additional costs.... In estimating the additional costs of disability, therefore, it is not sufficient to rely only on what people spend and the actual costs they incur, but what costs would be incurred in order to lead an integrated life. (Lonsdale, 1990, p 128)

The dependence of disabled people on state benefits has often been regarded as natural, uncontentious and unproblematic. Disabled people, however, assert that their consignment to endless benefit receipt is equally as oppressive as the surveillance and control experienced by unemployed claimants, since it systematically excludes them from possibilities of employment and participation in wider society and creates an ‘underclass’ of disabled people (Oliver, 1990; Barnes, 1991). This perspective has informed disability policy in Sweden and Germany, with their emphasis on rehabilitation, for some years (Thornton et al, 1997) and now underpins the New Deal for Disabled People in Britain, which aims to increase the proportion of disabled people in employment. The primacy of paid work as a source of income and social status has persisted despite mass unemployment. The satisfactions offered by work include status, social contact and personal fulfilment (Jahoda, 1982;Warr, 1987), and there is considerable evidence of physical and mental illhealth among those who are unemployed (Townsend et al, 1988; Warr, 1987; Gallie et al, 1994). Thus the exclusion of disabled people from the labour market has social as well as economic effects: Work is still central to modern industrial societies despite claims that we are moving to post-industrial, post-capitalist or the leisure society, not simply because it produces the goods to sustain life but also because it creates particular forms of social relations ... anyone unable to work, for whatever reason, is likely to experience difficulties both in acquiring the necessities to sustain life physically, and also in

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establishing a set of satisfactory social relationships. (Oliver, 1991, p 139)

The social benefits of employment may be particularly important for people who are living alone. Kutner (1984) also found that disabled women benefited from employment more than men. Policy is frequently ambivalent about the relationship of the disabled person to the labour market. Despite policies aimed at increasing the labour market participation of disabled people, the relative generosity of benefits for disabled people compared to unemployed people often reflects implicit or explicit expectations of a reduced ability or desire to seek employment. The right to work is a key demand of the disabled people’s movement (Oliver, 1990; Barnes, 1991) but work also has considerable costs in terms of time and energy. Because disabled people have so often faced discrimination and exclusion from the labour market, work has tended to be seen as an unqualified good. However, some are beginning to evaluate its advantages more critically: Maybe the work ethic requires reconsideration. Part-time employment can be considered…. Can there be such a thing as unemployment with dignity? We have taken employment as the highest good resulting from independence because it demonstrates good outcome and justifies the costs of rehabilitation ... but employment is hardly the only indicator of personal worth. (Corbet, 1993, p 221)

Abberley (1996) suggests that recent emphasis on employment rights in the British disability movement is a result of the Marxist analysis which underpins much disability theory. This, he argues, is responsible for a ‘romanticisation of productivity’ which risks creating an ever-more marginalised subgroup of disabled people for whom work is not a possibility: I therefore wish to contend that just because a main mechanism of our oppression is our exclusion from social production, we should be wary of drawing the conclusion that fighting this oppression should involve our widescale inclusion on social production ... a society may be willing, and certain circumstances become eager, to absorb a portion of its impaired population into the workforce, yet this can have the effect of maintaining and perhaps intensifying its exclusion of the remainder. (Abberley, 1996, p 71)

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Disability policies and the citizenship rights of disabled people

Abberley concludes by presenting disability and impairment as the basis for a new social movement which should challenge existing values and norms, rather than seeking to incorporate them. This includes questioning the centrality of employment in the campaign for civil rights.

Personal and social resources Personal resources are an extremely important influence on whether a disabled person is able to achieve self-determination. Such resources may not appear to be particularly amenable to interventions at the level of policy, but research has demonstrated that experiences of employment, and of successful participation in social life, have considerable potential to increase an individual’s personal resources (Hirst and Baldwin, 1994). Equally, policies may have damaging effects, for instance where social security provision appears to be ‘rewarding dependency’ and discouraging employment (Oliver, 1990; Barnes, 1991). Social networks are also important, both as an arena in which the disabled person participates, and in maintaining personal resources; Zola (1982b) cites friendship networks as important sources of self-esteem and strength. Friends are also an important source of information and advice for disabled people (Lamb and Layzell, 1994b). Locker (1983) found that disabled individuals with larger social networks felt more supported and secure, although they did not receive significantly increased practical assistance with daily living. Policies which assume that friends and neighbours are able to provide high levels of support may damage personal relationships by breaching norms of reciprocity in social life and also risk leaving the disabled person without resources they require (Baldock and Ungerson, 1994). As Coleman (1990) has argued, social capital, like economic capital, is also liable to depreciation if not renewed; patterns of social obligation and expectation fade if they are not actively maintained. Many social policies for disabled people assume that personal assistance will be provided by family members such as parents, children or spouses. There is a large literature (see, for example, Finch and Groves, 1983; Dalley, 1988, 1991; Parker, 1992) on the strains and hardships which such policies impose on those carrying out personal assistance tasks for family members. These, mainly feminist, analyses of the ‘costs of caring’ have been extremely contentious within the disability movement, as they have been taken to imply a demand for large-scale, institutionalised services which would reduce the autonomy of disabled people (Keith,

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Working for a living?

1992). However, the autonomy of disabled people is also compromised by having no choice about whether or not to receive personal assistance from family members. The way in which assistance is provided may not allow the disabled person to function autonomously, and the quality of personal relationships may be also eroded by the necessity of relying on a family member for assistance with bodily functions or by the sheer quantity of work involved (Morris, 1993). Time is another important resource for disabled people, and time spent on personal care tasks and housework may mean that they face issues of what Lewis (1992) refers to as ‘time poverty’, especially if they are also in paid work. For an individual to exercise autonomous choice it is vital that they are allowed to prioritise the activities which are most important to them as individuals (Morris, 1989; Stevenson and Parsloe, 1993). In practice, there are many countervailing pressures. Because success in rehabilitation is so often measured in terms of the disabled person’s employment status (Lonsdale, 1990), or their ability to carry out household or personal care tasks (Ellis, 1993; French, 1993b), time may be expended on these activities to the detriment of others. Individuals are encouraged to walk rather than use a wheelchair, and use manual rather than electric wheelchairs, because this is seen as ‘independence’, when they might prefer to conserve time and energy by choosing a less physically demanding option (Zola, 1982a). However, time also requires resources, if it is to be used for the maximum advantage of the individual. Thus an individual who has time, but lacks other resources, such as money, is likely to experience this as a burden rather than an opportunity (Tahlin, 1987). For disabled people, low rates of pay, together with rigid entitlement criteria for benefits, may mean that they share with other disadvantaged groups an unenviable choice between no employment or very long hours of work (Doyal and Gough, 1991; Corbet, 1993).

Independence or autonomy? Independence is a concept which is widely used in discussions about social policies relating to disabled people. Policy makers and disabled people alike assert their commitment to independent living. However, it is not necessarily safe to assume that they are talking about the same thing. Rock (1988) describes independence as: … an infinitely variable self-concept, unique to the individual, which concerns control and choice rather than any (objective) measure of

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Disability policies and the citizenship rights of disabled people

competence.... For example, someone who needs to be washed and dressed may regard independence as the need to be able to decide who washes them and how it is done. Whereas for someone who is able to undertake these tasks but cannot reach objects on high shelves, independence for them may mean ensuring that all shelves are situated within their reach so that they can reach objects whenever they wish without having to ask for assistance. (Rock, 1988, p 27)

In the industrialised societies of the West, however, ‘independence’ is generally taken to mean the ability to do things for oneself, to be physically and financially self-reliant. Physical and financial dependence are frequently understood as natural consequences of physical impairment, rather than as a result of the social construction of disability. For instance, the poverty of disabled people is seen as the inevitable result of the inability to work, or the inability to carry out self-care tasks is taken to imply an inability to make autonomous decisions. The disabled people’s movement has sought to redefine the concept of independence, and effect a paradigm shift which will alter both attitudes towards disabled people and the policy responses towards them. Such definitions of independence sit alongside competing definitions from other discourses, such as Right-wing critiques of benefit dependency, in an uneasy fashion. The independent living movement originated in the USA during the early 1970s. Its two main engines were the efforts of disabled people to seek a more fulfilling life in an able-bodied world, and the focus of rehabilitation professionals on disabled people for whom employment was seen as an unattainable goal. Reflecting these origins, there has been some difference of opinion between those who see independent living and employment as competing aims and those for whom employment is merely one aspect of a range of choices available to an individual (DeJong, 1979). The rehabilitation paradigm sought explicitly to focus on paid employment and what is described as ‘autonomous daily living’, referring to the ability to carry out self-care tasks, rather than the self-directed pursuit of goals referred to by the concept of ‘independent living’. The philosophy of the independent living movement is based on four assumptions (Morris, 1993): • • •

that all human life is of value; that anyone, whatever their impairment, is capable of exerting choices; that people who are disabled by society’s reaction to physical,

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•

intellectual and sensory impairment and to emotional distress have the right to assert control over their lives; that disabled people have the right to participate fully in society.

The emphasis is therefore shifted from physical self-sufficiency to personal autonomy. For professionals, however, the achievement of independence is still frequently perceived as something which can be measured by the disabled person’s ability to carry out self-care tasks. This may have detrimental effects on the autonomy of disabled people: Narrowly defined, independence can give rise to inefficiency, stress and isolation, as well as wasting precious time.... An overemphasis on physical independence can rob disabled people of true independence by restricting their freedom of thought and action. (French, 1993b, p 47)

Disability and independence are often experienced differentially by men and women (Lloyd, 1992). For women, independence may be seen to consist in being a person on whom other people are able to depend; a recognition of the ability to play a valued social role as a parent or partner may be particularly important (Morris, 1989; Keith, 1992). For other women, disability offers an escape route from traditional roles, albeit that it is achieved via ‘certified role failure’ as a wife and mother (Morris, 1989). For disabled men, their personal assessment of independence is more likely to be framed in terms of economic and professional roles (Oliver, 1990). Because the concept of independent living arose at least in part as a way of finding alternatives to institutional life for disabled people, issues concerned with personal assistance have tended to dominate debate (Morris, 1993). There has until recently been less emphasis on other aspects of independent living, as Thornton and Lunt (1995) point out in their discussion of the right to employment: Following Morris, independent living thus must encompass the full range of human and civil rights, including a right to employment. Despite these key assumptions, discussion of the place of employment in independent living has been limited. This is perhaps explained by the movement’s roots in disabled people’s attempts to achieve an alternative to residential care. Initial emphasis has rested instead upon the role of personal assistance and social services, education

16

Disability policies and the citizenship rights of disabled people

and housing in enabling independent living. (Lunt and Thornton, 1994, p 3)

This is, of course, entirely consistent with Maslow’s (1954) theory of a hierarchy of needs, which argues that until primary needs (such as those for food and warmth) have been met, it is not possible to meet ‘secondorder’ needs such as those for affection, intellectual stimulus and selfrespect. At both the level of the individual and that of wider political campaigns, employment issues cannot be tackled while basic needs for personal care remain unresolved. As improvements in the provision of personal care have been achieved, the attention of the disability movement has begun to shift to wider areas of social policy, such as employment and, to a lesser extent, social security policies. This exploration of the range of resources required for the effective exercise of citizenship by disabled people has highlighted the importance of social and legal rights. Both the substance of such rights, and the forms in which they are made available, vary from one welfare state to another, in ways which reveal the implicit relationships between disability, work, income maintenance policies and citizenship rights. The following chapter examines the contribution which an analysis of disability policies can make to our understanding of welfare state regimes.

17

TWO

Disability and welfare state regimes Impairment occurs in all societies, although the pattern of impairments which occurs in a given country is related to specific economic and social factors such as the level of industrialisation, the extent to which industry is regulated, poverty and diet, and the existence of immunisation and medical treatment programmes (Doyal, 1983; Abberley, 1987, 1991; Oliver, 1990). Disability, defined as the inability to participate in the usual activities of a society, arises as the consequence of the particular social arrangements in that society (Stone, 1984; Oliver, 1990). There are, inevitably, very large differences between the experience of disability in developed and developing countries. Oliver (1990) has argued that it is the particular social and economic arrangements found in advanced industrial societies which produce disability. Industrialisation and the pace of mechanised work, it is argued, have deprived many disabled people both of the opportunity to work, and of previously accepted social roles. While the economic surplus generated provides for redistributive mechanisms via the welfare state, the nature of provision inevitably reflects and reinforces dominant welfare ideologies. Social policies which are based on a view of disability as individual misfortune are likely to have a very different focus from those which are informed by a social model of disability. However, this may or may not result in contrasting patterns of outcomes for disabled people. As the aim of the research was to assess the impact of social policies on the lives of disabled people, it was necessary to select industrialised countries with developed welfare states for reasons of comparability. Sweden, Germany and Britain were chosen as representative examples of different welfare state regimes, on the basis of existing typologies (Esping-Andersen, 1990). They also have contrasting approaches to disability policy. The research has two main objectives. First, it compares the outcomes of disability policies in the three countries in terms of the extent to which they reinforce or remove disabling barriers to participation in social and economic life. Second, it seeks to explore whether, and to what extent, an analysis based on the situation of disabled people produces outcomes which are consistent with previous classifications of each welfare state.

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Comparative research on welfare states Comparative social research is a large and rapidly expanding field, and one which is still in the process of development. At the beginning of the 1990s, Ginsburg (1991) suggested an endeavour lacking in clear rules of engagement: The notion of ‘comparative’ analysis is problematic because it conjures up the hope that social scientists have developed rigorous methods and established schools of thought for comparing welfare states. Nothing could be further from the truth, and it is currently fashionable to use the term ‘cross-national’ policy analysis to avoid the methodological problems of exact comparison. (Ginsburg, 1991, p 73)

Until recently there have been difficulties in undertaking comparative analysis because of the lack of comparable data. Methodological advances have included the development of comparable microsocial datasets over recent years, including the Luxembourg Income Study, which harmonises income data from national surveys (Smeeding et al, 1990) and most recently, the European Community Household Panel, which uses a harmonised questionnaire, and includes a wide variety of social as well as income variables. The use of model families (OECD, 1990; Bradshaw et al, 1993; Eardley, 1996; Ditch et al, 1997) to compare the interrelationship of different policy instruments has also been developed as a way of taking account of the balance between transfers and services in different countries. Governments are increasingly using cross-national studies to inform national policy development, and the European Commission has established a number of Observatories to monitor national developments in specific policy areas such as the family, employment and older people. However, a gulf remains between studies concerned with policy analysis and those focused on outcomes. Moreover, researchers and governments alike are sometimes guilty of adopting ethnocentric positions which fail to take sufficient account of specific national factors involved in both the design and implementation of policy (Hantrais and Mangen, 1996).

Classifying welfare states Much early comparative social policy analysis was historical in emphasis, being concerned primarily to account for the origins of, and impetus

20

Disability and welfare state regimes

for, the development of welfare states. In doing so, they drew on the guiding paradigm of 19th and early 20th century comparative studies of law and government. Examples include Rimlinger (1971), Heclo (1974) and Baldwin (1990). While their strength lies in the depth of analysis applied to individual welfare states, they are rather less useful in their lessons for other countries, or in predicting the shape of contemporary developments. More recently, comparative policy analysis has moved away from institutional and legal attributes of government towards an emphasis on political functions and their socioeconomic context. Such analyses allocate welfare states to types, either on the basis of two axes of variation (such as the level of social spending or the strength of religion), or latterly, by ‘clustering’ groups of countries on the basis of a range of indicators, such as the commitment to full employment, the range and coverage of social security benefits, and the financing of social expenditure. Thus Wilensky (1975) identifies the level of industrialism, rather than political allegiance, as the predominant factor influencing the amount of welfare state expenditure in any given country. Political factors, in particular the strength of Left-wing power, are, however, seen as key determinants of welfare spending by a number of writers, including Furniss and Tilton (1977), Korpi (1983) and Esping-Andersen and Korpi (1984b). Esping-Andersen’s (1990) development of a typology of welfare state systems drew on Titmuss’ (1958) identification of a distinction between what he described as the ‘institutional’,‘residual’, and ‘industrial achievement’ models of welfare state development, but nonetheless marked a groundbreaking development in comparative social policy, representing as it did a move … from the black box of expenditures to the content of welfare states: targeted versus universal programs, the conditions of eligibility, the quality of benefits and services, and perhaps most importantly the extent to which employment and working life are encompassed in the state’s extensions of citizen rights. (Esping-Andersen, 1990, p 20)

Politics, concludes Esping-Andersen, are decisive, but not so much because of their influence on the overall level of welfare expenditure as in determining the types of regime which underpin welfare provision. Sainsbury (1994, 1996) has highlighted the neglect of explanatory factors relevant to women from such ‘regime cluster’ analyses, an issue to which we return later in the chapter. Castles (1993) has argued, more broadly, that such approaches systematically obscure important

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Working for a living?

influences on policy; the effects of history and culture, in particular, are argued to be inaccessible to a methodology which locates explanations of policy outcomes solely in contemporary socioeconomic and political phenomena. Arguably, such factors may have diminished in importance compared to the impact of large-scale economic and social changes which have transformed Western society. Equally, their value as explanatory variables, likely to be greatest in policy areas such as social protection and family policy, which draw on strong, if implicit, notions of ‘what is right’ for a given country (Schmidt, 1993), may simply be neglected within the prevailing intellectual paradigm. According to Esping-Andersen’s (1990) classification, the three countries selected for this study represent examples of the liberal, corporatist and social democratic regime respectively. These are identified on the basis of two key concepts: decommodification, the extent to which a person is able to obtain services as of right and obtain a reasonable income without reliance on the market, and stratification, the mechanism whereby welfare states maintain or modify existing class inequalities. The liberal model posited by Esping-Andersen is characterised by its residualism, an emphasis on provision by private markets, reliance on means testing, and attitudes favouring self-reliant individualism, with an emphasis on equality of opportunity rather than equality of rewards. Britain was originally assigned to this category with some reservations because of the existence of strong traditions of universalism which were seen to have a continuing influence on welfare provision. Later developments, however, show Esping-Andersen to have been prescient in this respect, as there have been moves to time-limit non-meanstested benefits, together with an increase in means testing, and a renewed emphasis on sanctions for those who refuse offers of work, even where it is poorly remunerated. Social democratic regimes, of which Sweden is generally agreed to be the archetype (Esping-Andersen, 1990; Baldwin, 1990; Ginsburg, 1992), are viewed as distinctive in favouring state intervention in both the labour market and the family, permitting a high degree of individual choice about employment and family obligations. There is a longstanding commitment to full employment as the main aim of welfare policy, and income maintenance benefits are regarded as a poor substitute for employment (Marklund, 1988; Leibfried, 1993). There is some evidence, however, that the relative importance of cash benefits in Sweden has been increasing during recent years, and numbers in receipt of benefit have grown considerably (Hedström, 1987). Corporatist or conservative regimes such as that of Germany are

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Disability and welfare state regimes

characterised by an emphasis on the maintenance of traditional family forms and social divisions. Stratification, rather than decommodification is the key determining feature: In summary,‘conservative’ welfare-state regimes differ from the social democratic variety not so much in their willingness to grant social rights, as in their corporative structure. It is, however, a structure where rights and duties are attached to occupation and status, not to citizenship. (Esping-Andersen, 1985a, p 232)

Both Wilson (1993) and Leibfried (1993) argue that a propensity to compensate workers excluded from the labour market by substituting the right to social security to the right to a job is the distinctive feature of ‘Bismarckian’ welfare states. This is an over-simplification, for while this is a long-standing tradition in Germany, the principle of work enforcement also has a long history. Tampke (1981) describes the harsh policing of sickness and injury schemes before the First World War, when claimants with any residual working capacity were made to carry out menial tasks. The development of a fully-fledged welfare state occurred later in Britain than either Germany or Sweden; it was not until after the Second World War that its distinctive features were put in place (Pierson, 1991). These include a commitment to free-market liberalism and a notion of welfare citizenship which is largely the outcome of political compromise, and owes little to broader concepts of citizenship rights. Women, in particular, have tended to be excluded from full access to social rights (Ginsburg, 1992). Social rights are closely tied to participation in the labour market, and levels of decommodification are low (EspingAndersen, 1990). Ashford (1986) identifies the postwar consensus on welfare in Britain, centred on the charismatic influence of Beveridge, as a fundamental weakness. In comparison to countries such as France, where welfare rights were won against bitter opposition, he argues that British welfare provision is both less entrenched and less valued by the public. With the accession of Sweden in 1995, all three countries are now members of the European Union. The inclusion of disability in the Amsterdam Treaty, signed in October 1997, which allows the Commission to present proposals to counter discrimination, has some potential to increase convergence between national disability policies, but its impact is likely to be weakened both by the fact that it is likely to

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Working for a living?

apply only to workers, and by the requirement for a unanimous vote by the Council of Ministers.

Refining the model Esping-Andersen’s work on the classification of welfare regimes has generated much interest and considerable criticism. Kemeny (1995, p 95) has gone so far as to suggest that “it may be the shortcomings of his analysis that prove in the long run to be the most fruitful”. One theme has concerned the absence from his analysis of measures relating to policy outcomes. Thus, Mitchell (1991) argues that the analysis of posttransfer incomes demonstrates markedly less inequality in Britain than would be consistent with its classification as a liberal welfare state. A substantial body of research has argued for the recognition of four, rather than three, ideal types of welfare regimes. Castles and Mitchell (1990, 1992) posit a model which places Britain alongside Australia, New Zealand, Finland, and Canada as a ‘radical’ group of countries, which although they do not spend generously on welfare transfers, nonetheless achieve substantial redistributive effects as a result of the policy instruments adopted. Leibfried (1993), focusing on the links between poverty, income maintenance and the labour market, also identifies four types of welfare state: Scandinavian or ‘modern’ welfare states which rest on the universal right to work and offer subsidised entry into the workplace rather than compensatory income transfers; ‘Bismarckian’ welfare states, such as Germany, in which the welfare state serves to compensate exit from the workforce rather than providing opportunities for employment;‘residual’ welfare states, including Britain and the USA, which operate to enforce labour market disciplines and provide compensation only as a last resort; and ‘rudimentary’ welfare states, such as those in the southern European countries, which rest on traditional forms of welfare, such as those provided by the Church, and an economy based on small-scale agriculture. He argues that both Scandinavian and Bismarckian welfare states are backed by the institutionalised concept of social citizenship, but that this is not the case in the Anglo-Saxon welfare states. Another contested area, and one which has now generated a considerable literature (see, for instance, Langan and Ostner, 1991; Lewis, 1992; O’Connor, 1993; Sainsbury, 1994, 1996), is the neglect of gender issues in Esping-Andersen’s work. His class-based analysis, concerned with the ability of wage-earners to free themselves from commodity status, is argued to obscure other dimensions of the welfare state. For

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Disability and welfare state regimes

instance, O’Connor (1993) argues that the attention directed on the relationship between the state and labour markets has led to a neglect of the analysis of relationship between the state and the family. Sainsbury (1996) argues that dimensions of variation in welfare states relevant to gender include such issues as whether taxation is joint or individual, whether family policy is neutral with respect to marriage, whether benefits are paid to individuals or heads of households, whether care of dependent family members is seen as a public or private issue, and whether such care work is paid or unpaid. Lewis (1992) was among the first to demonstrate that an analysis of the position of women and the treatment of women’s unpaid work leads to a different understanding of welfare state regimes. States which favour a ‘traditional family form’ in which men work and women with children remain at home do little or nothing to enable labour force participation by women. In the same way, states vary considerably in the extent to which attempts are made to adapt the working environment for disabled people. ‘Liberal’ welfare states, as in Britain, tend to make minimal interventions, and those measures which are taken are geared to the particular disabled individual; by contrast ‘social democratic’ Sweden does much more to ensure that workplaces are accessible to the disabled workforce as a whole (Lunt and Thornton, 1994). Shaver and Bradshaw (1993) discovered that when welfare states were grouped on the basis of the degree of support for particular working patterns of wives the resultant clusters bore very little resemblance to those produced by Esping-Andersen’s indices of stratification or decommodification. They argue for a broadening of the concept of decommodification to include not only wage replacement benefits but those benefits and services which exist to support workforce participation. In the case of families this includes such measures as child benefits, nursery provision and tax allowances. For disabled people relevant benefits and services will include provision for personal care needs, partial capacity benefits, tax allowances and assistance with transport. Alber (1995) also highlights the inadequacies of the concept of decommodification in dealing with those outside the labour market: The emphasis on the conflict between capital and labour systematically obliterates the study of new social problems which do not accrue in the labour market, but are tied to specific life situations that cut across positions in the class structure. (Alber, 1995, p 133)

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To the extent that life situations may be seen to operate independently of the class structure, relationships between the central state and local or municipal government become more important, acting to mediate the conflict between a growing demand for services and increasing fiscal pressures, but in turn modified by the state of the economy and the strength of religious associations. Alber suggests that, in the process of European unification, differences in the provision of social services are likely to persist, even as policies in respect of social transfers tend to converge, because of differing religious and political traditions. His analysis focuses on the needs of children and older people, who are not defined by their relationship to the labour market, in order to emphasise the importance of analysing variations in the supply of social services. Disabled people are in a slightly different position, since the incidence of disability, to a far greater degree than the age distribution, does vary by class. The types of provision which are made, both in terms of income maintenance policy and service provision, may also have an important role in stratifying disabled people, either on the basis of their impairment (where its cause or severity create differential entitlements) or on their previous occupational status. The situation of disabled people bridges the divide between those in the labour market and those who have withdrawn from it; labour and transfer income are important determinants of welfare, but social service provision may be equally as important. Anttonen and Sipilä (1995) compare both services for older people and those for children, and their findings are highly consistent with Leibfried’s categorisation of welfare states. On the basis of the role played by the public sector, they identify: • •

• •

a Scandinavian model, with extensive public services; a family care model, operating in the countries of southern Europe, where most services are provided by the family or the informal sector, while an affluent minority purchase commercial services; a British or Anglo-Saxon model marked by residualism, means testing and the visibility of commercial services; a central European susbsidiarity model, typified by Germany and the Netherlands, where formal responsibility for care lies with the family and services are provided by religious and political organisations but funded by the public sector.

Anttonen and Sipilä (1995) argue for an increased analysis of services within the welfare state:

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Disability and welfare state regimes

... the inclusion of social care services in the research tradition concerned with the modelling of welfare states is nevertheless an important step to broaden our understanding of the ways in which welfare states operate. (1995, p 98)

Important dimensions include whether there is an enforceable right to receive a particular service, whether it is free at the point of use, the extent to which service providers are politically accountable, and the extent to which services are used by all income groups (which may be seen as an alternative measure of stratification).

Comparing disability policies Ginsburg (1992) highlights the contradictions of social policy in both ameliorating the living conditions of certain groups while at the same time perpetuating inequalities and status divisions. Although welfare reforms are often seen as concessions to organised interests, most existing disability policies have tended to be largely ‘top-down’ initiatives. However, welfare states are beginning to respond to the criticisms of the disabled people’s movement in reforming provision for disabled people, and this may be an important factor in the development of future policy. As Jamieson (1991) argues, the outcomes of policy for a particular group result from the interaction between welfare state regimes, health and social service systems, existing patterns of provision, and the behaviour of group members themselves. Policy change may be directed at any one or more of these levels, but it is also likely to be constrained, or at least modified, by existing structures, services, behaviour and expectations. Thus we may expect to see different responses to a radical disability agenda from welfare states with different traditions of disability policy. In Germany, disabled people are defined as those who are limited in their capacity for integration into society because of the effects of a permanent physical, mental or psychological condition which is contrary to the norm. This definition is based on the proposals of the World Health Organisation, and is essentially an individual, medicalised concept of disability. The guiding principles of German disability policy are set out in the Social Code, established in 1975. This states that a disabled person has the right to any assistance necessary in order to: ... avert, eliminate or ease the disability, prevent its aggravation, or reduce its effects, and ... to secure a place in the community, in

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Working for a living?

particular in working life, in accordance with his or her inclinations and abilities. (Thornton and Lunt, 1997)

Four key principles underlie legislative and policy measures in respect of disabled people: integration (allowing the disabled person to live as normally as possible and avoiding wherever possible the use of special facilities and legislation); finality (providing assistance regardless of the cause of the disability or the responsible institution); early intervention; and assistance which is tailored to the particular needs of the individual (Thornton et al, 1997). As part of the negotiations involved in the Treaty of Unification,Article 3 of the German constitution was amended to prohibit discrimination on the grounds of disability in October 1994 (Frehe, 1995). Sweden is divided into 284 municipalities, which are responsible for providing economic and social security for the local population, and 24 counties. In most areas, it is the county council which is responsible for health care, although in a few areas this is the responsibility of the municipality (Swedish Institute, 1997). Municipalities are responsible for the payment of social assistance and for the supply of services to disabled people living in their own homes. The movement to de-institutionalise disabled people had a very late start in Sweden, with many disabled people now in their thirties having experienced institutional life either as a child or an adult (De Handikappade Riksforbund, interview data, 1995). The forms of supported housing which were developed for disabled people during the 1960s were intended to create more flexible ways of meeting needs for personal assistance. These, however, remained semi-institutional, and have been undergoing a process of change in recent years to make them more responsive to the needs of individual disabled people (Ratzka, 1986). Swedish disability policy espouses a social model of disability, and is often presented as having an exemplary approach to policies for disabled people. For instance Swain (1988) undertook a study tour of facilities for disabled people in the Nordic countries and commented on the high quality of life of Swedish disabled people compared with their counterparts in Britain. Certainly Sweden is unique in that official policy is so closely adapted to the models of disability advocated by the disabled people’s movement. However, it is clear that disabled people in Sweden continue to experience a range of barriers to full participation in society. The surveys undertaken by the 1989 Commission on Disability found that disabled people were much less likely to be employed than

28

Disability and welfare state regimes

their non-disabled peers, and that they experienced symptoms of reduced mental well-being much more often (Statistics Sweden, 1992). One notable aspect is the large degree of geographical variation in the availability of services. This is partly related to the infrastructure of transport, housing and so on in rural areas compared to urban areas. It also reflects decentralised policies and funding structures which permit a high level of autonomy for individual municipalities (Gould, 1988; Ministry of Health and Welfare, 1992). Ratzka’s (1986) monograph on personal assistance describes examples of individuals being forced to move to areas (typically large cities) where their needs for assistance could be met. Traditionally there has been resistance in Sweden to the idea of creating specific legislation aimed at safeguarding the rights of disabled people. This is because of a belief that this would serve to segregate disabled people from the rest of society, rather than fostering integration. In keeping with this belief, legislation on the rights of disabled people has generally been included within other relevant legislation, for instance in housing, education or employment law. The final report of the 1989 Commission on Policies of the Disabled (Ministry of Health and Social Affairs, 1992), however, strongly recommended the introduction of antidiscrimination legislation along the lines of the 1990 Americans with Disabilities Act. Another outcome of the 1989 surveys of disabled people was the recommendation that an Ombudsman for Disabled People be appointed. Sweden has now had a Disability Ombudsman (Handikappombudsmannen) with an important monitoring and lobbying role since 1994. The work of the Disability Ombudsman is regulated by a special statute which obliges local authorities to supply information or engage in negotiation when the ombudsman requires this. During its first year, the Ombudsman’s office dealt with over 1,000 cases. Over 60% of complaints received were concerned with access issues, while about 13% involved social security and income maintenance and around 10% employment issues. A series of annual reports have proposed increased measures to improve access to the built environment by the year 2005, antidiscrimination legislation forbidding discrimination at work (recently enacted), and the requirement for a ‘disability statement’ setting out the implications of proposed changes to form part of all policy proposals. Hass and Jonsson’s (1994) research into the quality of life experienced by disabled people using welfare services gives the results of interviews with disabled people aged between 5 and 63. Where disabled people were receiving municipal social care services, it was frequently felt that

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Working for a living?

these lacked a rehabilitative element and tended to foster continuing dependency. Among disabled people, those with greatly reduced working capacity and those with mobility problems were found to have the most reduced levels of welfare. There are a large number of organisations for disabled people in Sweden. The National Council for the Disabled lists over 200 grantaided organisations in its most recent directory. At a national level, there are 40 organisations representing particular groups, while 2,000 support groups operate at the local level (Swedish Institute, 1997). Ratzka, writing in 1986, suggests that the majority of Swedish disability organisations are run by non-disabled people. It appears that this may have changed to some extent, and many of the organisations are members of Disabled People International, which is organised by disabled people themselves, although they may not be in the majority (National Council for the Disabled, 1993). Gundelach (1993) suggests that Sweden has been particularly successful in co-opting new social movements into existing structures, and thus the distinction may be less pertinent than it is in Britain. Categories of citizenship rights may be complementary, but this is not guaranteed. Taylor-Gooby (1991) argues that there is a danger that the weaker claims of social rights may be provided as substitutes for political rights, a situation identified much earlier by Marshall’s warning of the dangers of ‘welfare without citizenship’ (Marshall, 1981). Rees (1995), however, asserts that the distinction is artificial, and that in the UK many social rights have a legislative base, unlike civil rights, which, in the absence of a written constitution, are defined negatively. Moreover, these are not immutable certainties: The truth is that given an adequate Parliamentary majority, rights may be enacted, added to, abridged or abrogated with relative ease in the United Kingdom. It makes little difference whether they are classed as civil, political or social. (Rees, 1995, p 316)

In the same way, Langan and Ostner (1991) emphasise the precariousness of women’s rights: Agency, political or economic, is given to women as gift, if they can prove to society that they deserve it. It thus reveals the incomplete citizenship of women. What is called the ‘women friendly’ state or policy can easily be taken away even though it is based on claims. This can happen because state given ‘emancipation’ relies heavily on

30

Disability and welfare state regimes

the fragile and contingent consent of those who have always so far held state power: men. (Langan and Ostner, 1991, p 142)

Table 2 provides a summary of the key features of welfare state regimes which are relevant to an analysis by gender or disability. In the same way as feminist analysis incorporates a number of non-market criteria, such as the length of maternity leave or the provision of childcare, the welfare outcomes of disabled people are determined as much by the existence of anti-discrimination legislation and the provision of personal assistance as by labour earnings. These aspects of policy and their outcomes will be explored in detail in later chapters. The situation of women and disabled people in relation to the welfare state is not merely similar but interconnected, since the absence of positive policies in respect of disabled people is often predicated on the assumption of care services provided by women within the family. Table 2: Comparing welfare states Conventional criteria • • •

% of GDP on social expenditure strength of church/left power (votes for confessional/social democratic parties) stratification (modification or reinforcement of class position)

• • •

decommodification means tested versus universal social welfare role of markets/state

•

outcomes – eg pre- and post-transfer poverty rates

Feminist analysis • • •

maternity/paternity/parental leave level of female employment/wage levels poverty rates of women relative to men

• • •

childcare provision and funding tax incentives to single/dual earner households individual/joint entitlement to pensions and benefits

•

provision and funding of care for older people and disabled people

Analysis by disability • • •

employment rates/wages of disabled people poverty rates relative to non-disabled people right to work (compulsory employment or active labour market policies)

• • •

level and eligibility criteria for disability benefits provision and funding of personal assistance anti-discrimination legislation

31

Working for a living?

However, an analysis of the position of disabled people may also yield fresh insights into the nature of welfare systems. Ginsburg (1992) argues that there are remarkable similarities between Germany, Sweden and Britain in the withholding of citizenship rights to racialised minorities, while at the same time there are considerable differences in the actual welfare status enjoyed by these groups in each of the three countries. In a sense the reverse is true of the situation of disabled people, in that what appear to be rather similar systems of income maintenance for disabled people in each country exist alongside differing conceptions of the citizenship rights of disabled people. These have important, and possibly contradictory, implications for their ability to participate in society. In addition to providing contrasts in terms of the traditional groupings of welfare state regimes, the three countries selected were chosen because they represent different constructions of disability, and of the assumed relationship between disability and employment. Putting the issue of personal autonomy at the centre of social services highlights the perspective of women, but autonomy is also useful to the people who use services, such as frail elderly and disabled people. In line with Esping-Andersen’s notion of market dependency, we may also refer to ‘care dependency’ which is at quite sharp variance with modern notions of individual autonomy. The efforts of women to strengthen their personal autonomy through wage employment as well as the expectations of the disabled or elderly people of a normal life have made care dependency a social policy issue. (Anttonen and Sipilä, 1995, p 90)

If the reason for women’s position in relation to the welfare state stems from their ambivalent relationship to the labour market, this is at least equally true of disabled people. Policy for disabled people will construct disability differently depending on whether disabled people are viewed as workers or as non-productive recipients of welfare benefits. Policies which emphasise the work role for disabled people may, however, be in danger of creating a dual system of welfare, which privileges those disabled people who are working while providing an inferior level of welfare for those who are not. Conversely, if disability is conceptualised as granting exemption from the duties of citizenship, there may be few opportunities for disabled people to work, and entitlement to income maintenance may be conditional on the acceptance of a stigmatised identity (Stone, 1984). As Ratzka (1986) observes, it is the position of disabled people

32

Disability and welfare state regimes

relative to their non-disabled peers which is the true measure of policy outcomes: The most important guideline in constructing a quality measure should be derived from a comparison of citizens with disabilities and their non-disabled peers. If the aim is to be full emancipation and participation people with disabilities have to have the same degrees of freedom in all important aspects of life, be it education, employment, transportation, housing, political, economic, social and cultural life of their community. (Ratzka, 1986, p 55)

Examining the nature of the relationship between paid work and the living standards of disabled people extends and modifies the concept of decommodification. Esping-Andersen presents decommodification as a positive attribute, implying free choice on the part of the worker as to whether they will participate in the labour market or make use of some other status, such as early retirement or parental leave, in order to leave the labour market (whether temporarily or permanently). Shaver and Bradshaw (1993) illuminate the limitations of the concept of decommodification in explaining the meanings of the welfare state for women. While it is a valid indicator for those women who are fully engaged in the labour market, it has less relevance to those who are not. Welfare states, it is argued, offer emancipatory potential for women to the extent that they allow for the commodification or recommodification of their labour by providing opportunities and support for paid employment. In the same way disabled people are frequently denied the opportunity to work because of assumptions about their productivity, interest, reliability or suitability as workers. While, for Esping-Andersen, decommodification is viewed as a prerequisite for the political mobilisation of workers, the reverse may be true for disabled people, since political participation may be accessible only as a result of engagement in the labour market. How the right or the obligation to work will be perceived depends on the type of work which is available, since a compulsion to undertake paid work will be experienced as oppressive if the work is low-paid, unsatisfying and inappropriate to the individual, whereas the opportunity to undertake suitable work will represent an increase in welfare. In analysing living standards, our concern is not simply with material living standards, but with the conditions of entitlement, and with the extent to which social participation is possible. There is considerable difference in receiving a disability income as of right and one which is only granted

33

Working for a living?

after humiliating medical examinations designed to deter malingerers. For disabled people recommodification and personal autonomy is likely to require both a strongly enforced right to work, together with policies which provide a good level of income, under reasonable conditions of entitlement, for those who work reduced hours or not at all. While Esping Andersen’s (1990) concept of welfare state regimes represented a considerable theoretical advance in comparative social policy analysis, it is clear from the evidence reviewed in this chapter that there are a number of weaknesses in the model, which arise in large part from the narrow range of criteria used to compare welfare states. The concepts of decommodification and stratification, in particular, are of limited value in analysing the labour market situation of women (Lewis, 1992; Sainsbury, 1994, 1996) or of disabled people, while a concentration on policy inputs (in the form of the proportion of GDP devoted to social expenditure, or the balance between universal and means-tested benefits and services) has a tendency to classify welfare states on the basis of their orientation rather than the actual outcomes they generate (Mitchell, 1991; Castles and Mitchell, 1990, 1992). The analysis which follows attempts to grapple with these difficulties. By concentrating on a group with an ambiguous relationship to the labour market, it underlines the challenge already presented to EspingAndersen’s typology by feminist critiques, while seeking to incorporate the important perspectives of Mitchell (1991) and Castles and Mitchell (1990, 1992) by focusing on the structure of policy inputs and their outcomes.

34

THREE

Employment and working life

Introduction For people of working age, employment is not only the main determinant of living standards, but is also a source of personal identity, social contacts, self-esteem, and time structure (Jahoda, 1982). Exclusion from paid work is known to be a key factor in the exclusion of disabled people from wider society, but not all work is beneficial. Disabled people can often find themselves trapped in short-term, poorly paid, inflexible or unsatisfying work (Barnes, 1991; Christie and Mensah-Coker, 1999). Policies are frequently directed towards increasing the labour supply of disabled people (Thornton and Lunt, 1997; Barnes et al, 1998; Hyde, 1996) whereas changes in labour market demand are more likely to improve employment prospects for disabled people; for instance, recent increases in the employment of disabled women in the USA have been attributed to new employment opportunities, particularly part-time employment (Yelin and Cisternas, 1996). From the perspective of the social model of disability, changes in the social organisation of work have the most potential to improve the employment prospects of disabled people (Erlanger and Roth, 1985; Oliver, 1990). This argument is borne out by research evidence, which shows that, although some disabled people require specific adaptations or equipment in order to work, the majority have needs connected with the way in which work is organised and would benefit from changes in the way work is organised, such as flexible working hours and being able to take rests when required (Prescott-Clarke, 1990; Erens and Ghate, 1993). There is conflicting evidence on whether disabled people are likely to want part-time, rather than full-time, work (Kutner, 1984; Martin et al, 1989; Prescott-Clarke, 1990; Berthoud et al, 1993) and it is not clear whether those disabled people who work part-time do so from choice or because of a lack of alternatives (Barnes et al, 1998). Some commentators have suggested that women are more likely to prefer part-time work (Thomas, 1992) and there is some evidence that disabled men do not view part-time employment as a ‘real job’ (Rowlingson

35

Working for a living?

and Berthoud, 1996). The quality of the work environment may also be an important factor in the overall experience of employment, especially for people with painful or tiring conditions. This chapter reviews employment policies in the three countries and goes on to compare the experience of work for disabled and non-disabled people from survey data, looking at rates of employment, hours worked, working conditions and pay received. It also examines attitudes towards work, to explore whether there is any evidence of differences in orientation between disabled people and their non-disabled peers.

Disability and the labour market Levels of labour force participation in Sweden have been consistently high for the entire postwar period. Labour market policy in Sweden is geared to the maintenance of full employment. Although this has proved impossible to sustain during the recessions of the 1990s, it remains a long-term goal. Active labour market policies are an essential part of this strategy; around 5% of the active labour force was involved in some kind of labour market programme in the early 1990s (Thornton et al, 1997). Marklund and Svallfors (1985) argue that many disabled people in Sweden are marginal workers who have a weak relationship to the welfare state. Although labour force participation rates for disabled people are high compared with other countries, they have caused considerable concern in Sweden, and there has been a renewed emphasis on the principle of vocational rehabilitation since the early 1990s (Lonsdale, 1993). Policies aimed at the integration of disabled people have been in place since the 1940s and many of the main provisions were developed during the 1960s and 1970s. These include the 1974 Security of Employment Act, which is intended to improve the job security of all employees, and requires employers to make special provision for employees who are unable to carry out their job because of illness or disability. The Work Environment Act of 1977 also requires that workplaces should be adapted to the physical and mental requirements of employees. Employment promotion is covered by the 1974 Act Concerning Certain Employment Promoting Measures (amended 1985) which requires employers to cooperate with county labour boards to increase the employment of older and disabled workers. However, responsibility for disabled workers is increasingly being devolved to employers and social insurance offices, reducing the role of labour market regulations (Thornton et al, 1997). In Sweden, labour market measures

36

Employment and working life

for disabled people are based on the concept of occupational disability. A person is regarded as occupationally disabled if he or she has (or is expected to have) difficulties in obtaining or retaining gainful employment as the result of an impairment, medical condition or illness. A medical condition which does not limit work capacity cannot be regarded as an occupational disability (Thornton and Lunt, 1997). In Germany, statistics relating to the employment of disabled people are based on those registered as severely disabled. Since registration is voluntary, the figures cannot be taken as representative of the disabled population as a whole. Around 8% of the population is registered as severely disabled, although the rate is double this among those aged 55 and over (Thornton and Lunt, 1997). Official statistics estimate the participation rates of disabled people at only half that of non-disabled people. In 1989, the participation rate for men in West Germany was 32.9%, compared with 63.8% for non-disabled men; for women the respective rates were 18.3% and 38.8% (Thornton et al, 1997). There are about 1.14 million disabled people in the German labour market, of whom one million have jobs. Roughly 150,000 of these are in sheltered employment. Certain forms of rehabilitation are geared primarily to placing people in this sector, as in the case of people with chronic mental health problems. This is seen as detrimental to the individuals concerned, since they they unable to earn sufficient money to cover their living expenses, and remain segregated in a detached labour market which denies them many of the social benefits of employment (Eiklemann and Reker, 1993). There is also considerable evidence of segregation in the open labour market. Backes-Gellner and Frick (1990) found that disabled people were more likely to be doing work for which they were over-qualified, and to be working part-time in the service sector; about 15% of their sample had such work compared with 2% of men and 27% of women in the workforce as a whole. Part-time work of this nature tends to be characterised by low rates of pay and inferior holiday and benefit entitlements. There are 29.56 million economically active people in Britain, and 7.59 million economically inactive people of working age, of whom two million say they would like to work. Among the working-age population, the disability rate (defined as either a work-limiting condition or a condition which is covered by the Disability Discrimination Act) is 18%, although this rises with age, and is closer to one in four in areas of previous heavy industry in Wales and the North East. These areas also have high unemployment rates and depressed labour markets (Blackaby et al, 1999). A review of Employment Department services

37

Working for a living?

for disabled people was published in 1990 following a National Audit Office evaluation (Department of Employment, 1990). The proposals outlined in this report have led to changes in the services provided, most notably in the increasing use of voluntary sector agencies to provide rehabilitation services, extension of the role of the Disability Employment Adviser and an increased emphasis on the role of Sheltered Placement Schemes (which make employment available to disabled people within ordinary workplaces). In practice these changes have been financed by the closure of large sheltered workshops and there has been concern that those who have obtained employment have been those who were easiest to place and not those who were former workshop employees (Thornton and Lunt, 1997).

Unemployment Levels of unemployment in Sweden fell after 1995, following a steep rise in the early 1990s, but remained at almost three times their 1991 level. The number of occupationally disabled people who are unemployed has increased rapidly in recent years, although the rise has been less rapid than among the population as a whole. Westerhäll (1996) suggests that the changing nature of the labour market, especially the increasing demands for education and a wide range of skills, is a problem for people who are disabled and have a low standard of education. For this group, some form of sheltered employment is viewed as the only realistic option. In Germany, severely disabled people are over-represented among the long-term unemployed. Nearly half remain unemployed for over a year, compared to only a third of unemployed people as a whole. Older disabled people and those with fewer formal qualifications remain unemployed for longest. Moreover, very few disabled people who are registered unemployed stop claiming because they have found work; in 1993 over three quarters took early retirement or claimed sickness benefits, while only one fifth obtained employment (Thornton et al, 1997). Recent information on the labour market situation of disabled people in Britain (Sly, 1996; Blackaby et al, 1999) suggests that disabled people are over twice as likely as non-disabled people to be unemployed. Certain groups have particular problems in obtaining employment; those with learning difficulties and mental health problems have much higher rates of unemployment than those with a functional impairment (Sly, 1996; Blackaby et al, 1999).

38

Employment and working life

Early retirement Increasing numbers of disabled people in Germany have taken early retirement during the 1980s, taking advantage of a provision which allows people with over 35 years of contributions to retire on a full pension at 60 if they are disabled. This has also formed an important part of private employers’ restructuring strategies (Frick and Frick, 1994). Sweden has also experienced the phenomenon of disability pensions functioning as a variant of early retirement pension as industries have shed workers, especially older and unfit workers, during the recessions of the last two decades, although workers have tended to remain in the labour market until later ages than in other countries (64% of men aged 60 to 64 are gainfully employed) or to undertake part-time work, a situation characterised by Wadensjö (1991, 1993) as ‘partial exit’. In Britain, claims for Invalidity Benefit have formed one of several pathways into early retirement, particularly for manual workers, in recent years of high unemployment, and participation rates in older age groups are low, especially for disabled people (Laczko and Phillipson, 1991).

Employment policies for disabled people In Ger many, the 1974 Severely Disabled Person’s Act (Schwerbehindertegesetz) provides for mandatory employment of disabled people, special protection against dismissal, and representation in the workplace. Determination of disability status is the responsibility of a designated welfare organisation, acting on the basis of guidelines produced by the Federal Ministry of Labour and Social Affairs. This office is responsible for assigning a percentage assessment of functional disability, which may be set between 20% and 100%. The provisions of the Severely Disabled Persons Act apply to those assessed as 50% disabled (‘severely disabled persons’) and to those assessed at between 30% and 50% who have problems obtaining or retaining employment due to their disability (referred to as ‘those on the same footing’). Vocational rehabilitation is the cornerstone of employment policy for disabled people in Germany. The general aim is to ensure equality of opportunity between disabled and non-disabled people in the labour market. The primary focus is on the attainment of recognised occupational qualifications, although there are alternatives for those for whom this is not judged to be a realistic option (Lunt and Thornton, 1997). Until the end of 1996, all disabled people had a claim to vocational rehabilitation measures. It was not necessary to be registered as severely

39

Working for a living?

disabled; only about 10% of those who took part were registered. From 1997, these measures are only available as of right to those who are registered severely disabled. Benefit levels have also been reduced to bring them into line with the amount of benefit paid by employment offices. Four different types of benefit can be paid during vocational rehabilitation, which are collectively referred to as payments/assistance for living (Leistungen zum Lebensunterhalt). ‘Work for all’ has been the guiding principle of the Swedish welfare state, for disabled as well as non-disabled people, and there are a large variety of schemes to facilitate the employment of disabled people. For many people, however, employment has been provided in the form of sheltered workshops and other specialist forms of provision, rather than on the open labour market (Lunt and Thornton, 1997; De Handikappade Riksforbund, interview data, 1995). This may limit the role of employment in increasing integration in wider society, although it does not appear to be particularly controversial in Sweden. The main scheme providing assistance with employment for disabled people in Britain is Access to Work. Assistance is provided by disability employment advisers working as part of the Placement Assessment and Counselling Service. Access to Work can provide a wide range of assistance including equipment, alteration to premises, people to assist with communication, job-related tasks or personal care, and transport. It can be applied to part-time or full-time work, and can also be used if the disabled person works from home. There is a cost limit of £21,000 over five years for each person, although it is sometimes possible for this to be exceeded in individual cases. The New Deal for Disabled People represents the first concerted attempt to implement active labour market policies for disabled people in Britain. Funded initially by the windfall tax on the sale of public utilities, but to be supported from general taxation in future, it consists of two elements: a personal adviser services, for a two-year period, to assist those living in 12 pilot areas in obtaining or retaining employment, and around 20 ‘innovative schemes’, all but one at a local level, seen to be pioneering good practice in helping disabled people to work. (The most recent Spending Review announced the extension of the New Deal for Disabled People nationally, but details were not available at the time of writing.) The New Deal for Disabled People aims to help disabled people into work, assist people who become disabled to remain in work, and generally promote the employability of disabled people and publicise the services which exist. Participation is voluntary and early indications (Arthur et al, 1999) are that only a very small minority

40

Employment and working life

of those contacted so far have agreed to take part, and that these were people who were likely to have found work in any case, being younger and better qualified than disabled people as a whole, with a partner in paid work and access to private transport. They tended to have become disabled in adult life, and to have considerable previous employment experience, although almost a third had not worked in the last five years. By contrast, over three quarters of those who did not take part described themselves as unable to work, and half had never worked at all. From April 2000, for a period of two years, the personal adviser element of the New Deal is being replaced by a requirement for disabled people living in the 12 pilot areas to attend an interview about their employment prospects when making an initial claim for Incapacity Benefit and Severe Disablement Allowance. However, it is not compulsory to seek work following the interview.

Wage subsidies Wage subsidies are intended to stimulate labour demand by providing incentives for employers to take on disabled people. The intention is that subsidy will offset any loss of productivity, and compensate for any additional costs involved. They are widely available in Sweden and Germany, but have played only a very minor role in Britain. There are three main wage subsidy schemes in Sweden. Open employment with subsidy is available in all sectors of the economy. The government-owned Samhall group of companies provides employment in its sheltered workshops. In addition, sheltered work in the public sector is available for those with mental disabilities. Together with temporary work, these three schemes accounted for 40% of disabled job seekers who obtained employment during 1995 (SOU, 1997). Wage subsidies are discretionary, and there is no formal limit to the number of subsidised employees who may work for a particular employer. Subsidies meet up to 80% (100% in the case of severe disability) of wage costs (subject to a ceiling) plus contributions, but there is no financial incentive for an employee who takes up a subsidised post. Wage subsidies can be paid for part-time and full-time employment; most of those working part-time with subsidy are employed by Samhall. Wage subsidies are intended to be temporary and initial awards are for a period of four years, although they can be renewed, and people are often subsidised for considerable periods of time, as there is no reason for either employer or employee to bring the arrangement to an end (Thornton et al, 1997). Wage subsidies are viewed with some ambivalence

41

Working for a living?

by disabled people and their organisations, as they are felt to be demeaning where an employee is able to carry out the job as well as a non-disabled person. However, they undoubtedly provide a positive incentive for employers to recruit disabled people, and they are also a valued form of funding support to small organisations working in the disability field (Berg, personal communication, 1995). In contrast to the situation in Sweden, wage subsidies in Germany are regarded as being of minor significance. The main wage subsidy is the Eingliederungszuschuß (integration subsidy) which is paid to the employer of a severely disabled person. This is a specific scheme under the Severely Disabled Persons Act. Disabled people are also a priority group for subsidy under the general scheme which applies to the longterm unemployed, although the subsidy is both lower and for a shorter period than under the dedicated scheme. Subsidies for disabled people are funded from the compensatory levy and are available to employers who are not subject to quota requirements, or who have already fulfilled the quota, but not to those who have failed to meet this obligation. They apply to unemployed disabled people in the following categories: • • • • •

those with less than 70% of the capacity of a ‘normal’ employee; those whose employment will entail extraordinary costs for the employer; those with an assessed disability of 50% or more; those unemployed for 12 months or more; those aged 50 or older.

They are also available in respect of disabled people leaving education, professional training, sheltered workshops or probationary employment. Subsidies are available for three years, tapering from 80% in the first year to 60% in the third. Additional subsidy is available in the case of severely disabled people, workers over the age of 55, and for those undergoing professional training. Separate wage subsidies are available to employers who retain an employee who becomes disabled while in their employment. Entitlement is generally reviewed once subsidy has been in payment for two years (Seyfried, 1995). In 1996, integration subsidies were granted to 9,100 disabled people; of these, only 1,700 were classified as having a reduced output. The vast majority (7,000) were physically disabled, and over two thirds of the total were men (Thornton et al, 1997). As in Sweden, employees in subsidised work receive the normal wage for the job; the incentive is aimed at the employer rather than the

42

Employment and working life

employee. Employers are required to provide continuing employment for the disabled person after the end of the subsidy period, and must repay any subsidy received if they fail to do so. Wage subsidies are widely regarded as a poorly targeted policy measure in Germany. Firms tend to view them as windfall profits, and the vast majority of grants are accounted for by a handful of large companies. It is estimated that up to 85% of all placements would have occurred without the payment of subsidy (Frick, 1992; Burger and Schröder, 1995). In Britain, wage supplements for reduced productivity are available for people in the Supported Placements Scheme, run by the Employment Service. They are available where a person comes within the DDA definition of disability and whose productivity is estimated at 30%-80% of a ‘normal’ person’s. People with learning difficulties account for the majority of placements (Thornton et al, 1997). As in the other two countries these subsidies are paid to the employer, not the employee.

Compulsory employment Both Germany and Britain have some experience of compulsory employment policies for disabled people, but there is no history of compulsory employment in Sweden, and employers have consistently opposed any moves to introduce it (SAF, 1994). In Britain, the 1944 Disabled Persons (Employment) Act introduced a voluntary mechanism for people to register as disabled and a requirement for employers of 20 or more people to employ at least a 3% quota of registered disabled people. While it was not illegal to be below quota, it was illegal to employ a non-disabled person when below quota. In practice, 80% of employers failed to meet the quota, and they were able to obtain exemption certificates by arguing that there were no suitable registered disabled applicants for the post. There were only 10 prosecutions under the 1944 Act and none between 1975 and its eventual repeal on the introduction of the Disability Discrimination Act in 1995, so that there was little incentive to comply with its provisions (Gooding, 1994). Although the quota had a symbolic value to disabled people and their advocates, and its repeal was resisted vigorously and remains contentious (Barnes, 1998), it had been of limited practical significance from its inception, as Bolderson (1980) has argued, because of the concessions which were made to organised interests such as the trades unions and employer organisations. Compulsory employment has a long tradition in Germany, and has existed in some form since 1919. The present legislation, the Severely

43

Working for a living?

Disabled Persons Act (Schwerbehindertergesetz) was introduced in 1974, and amended in 1986 and 1990. It requires all public and private sector employers with a workforce of 16 or more to ensure that at least 6% are registered severely disabled people1. Employers are liable to fines if they do not fulfil the quota, but in practice these are only very rarely imposed. In 1994, 76% of employers subject to the quota were failing to meet their obligations; of these 37% were not employing a single disabled person (Thornton and Lunt, 1997). Employers who do not comply with the requirements of the quota legislation are subject to a compulsory levy in respect of each unfilled place, intended to sanction noncompliance and to distribute the costs of employing disabled people equally among firms. Its effectiveness in the former role is somewhat limited, since at DM 200 per month (unchanged since 1990) many employers find it cheaper to pay the levy than to take on a disabled worker (Thornton et al, 1997). The quota system also tends to favour the retention of existing employees, rather than the recruitment of severely disabled people (Brandt, 1984; Oyen, 1989; Sadowski and Frick, 1992). Over two thirds of firms do not recruit any disabled people from the open labour market (Brandt, 1984).

Anti-discrimination legislation Anti-discrimination legislation in respect of disabled people has been in force in Britain since 1996. The 1995 Disability Discrimination Act creates a duty on employers of 15 or more people not to discriminate against disabled people in recruitment, training, promotion, working conditions and dismissal, and requires an employer to make reasonable adjustments2 to the physical or organisational working environment where a failure to do so would place the disabled person at a substantial disadvantage compared with a non-disabled person. This duty arises between a specific disabled person and an employer, rather than a general duty owed by all employers to all disabled (potential) employees. The Act also provides for protection against discrimination in the provision of financial services, extends the scope of the building regulations, creates a new advisory body on disability and discrimination (the National Disability Council) and provides a right of redress against discrimination in the provision of goods and services (where these are physically accessible). The Disability Discrimination Act had an immediate impact. Almost 600 cases were taken to industrial tribunal in the first year of the Act (Clements, 1997). However, the legislation has a number of limitations. A recent study found that many people remain unaware of

44

Employment and working life

its existence, or have little knowledge of its scope, particularly in relation to discrimination at the recruitment stage (Meager et al, 1999). The fact that indirect discrimination cannot be challenged also weakens the legislation; such claims have been important in the area of sex and race discrimination (Palmer et al, 1997, Barnes, 1998). Following the election of the Labour government in 1997, a Disability Task Force was established to consider how best to secure comprehensive civil rights for disabled people and to make recommendations on the role and functions of a Disability Rights Commission. Its final report recommended, among other things, the extension of anti-discrimination legislation to cover indirect discrimination, and investigating the possibility of taking action to remove barriers for groups of disabled people, rather than a succession of individuals having to bring separate legal cases (www.disability.gov.uk). From April 2000, the National Disability Council has been replaced by the Disability Rights Commission, which has a remit to provide advice and assistance to those facing discrimination, rather than a simply advisory role. The Swedish Disability Ombudsman has made repeated calls for comprehensive anti-discrimination legislation, and there has been a vigorous campaign by organisations of disabled people. Although comprehensive legislation has not been enacted, a law forbidding discrimination against disabled employees or job applicants – lag (1999: 132) om förbud mot diskriminering i arbetslivet av personer med funktionshinder (Law forbidding discrimination against disabled people in working life) – came into force in May 1999, and further legislation outlawing discrimination in business trading is the subject of an inquiry by the Justice Department (Yngwe, 2000). Both direct and indirect discrimination in employment are forbidden, and lack of access to workrelated education or a varied workload can also be challenged under the Act. By July 2000, two cases had reached the labour courts, although neither had yet been resolved, and a further 30 cases were being investigated by the Disability Ombudsman (Yngwe, 2000). Although the German constitution contains an anti-discrimination clause in respect of disability, there is no specific legislation outlawing discrimination in employment. Some areas, including the City of Bremen, have incorporated a general anti-discrimination provision into local legislation, for instance governing transport and access to buildings. In Sweden, architectural barriers are covered by the 1966 Planning Act and the 1987 Planning and Building Act, which require buildings for residence, employment or public use to be designed so as to be accessible to those with reduced mobility or a decreased sense of orientation.

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Working for a living?

However, there are numerous exceptions to the legislation, particularly in respect of older buildings, which seriously limit its operation in practice (Berg, personal communication, 1995).

Other employment policies In Germany, the Severely Disabled Persons Act requires the nomination of a disabled person’s representative in firms where five or more severely disabled persons are employed. These individuals, who are selected by disabled employees themselves, have the task of representing their interests and must also be consulted under certain circumstances. Disabled people who have been employed for at least six months also enjoy special protection against unfair dismissal. Employers considering the dismissal of a registered severely disabled person are required to obtain the approval of the Hauptfürsorgestelle before giving notice. They are also required to consult with the local assistance council, the works councils, the individual concerned, and the disabled person’s representative in the organisation. The aim is to ensure that dismissal is only considered as a last resort, after all other possibilities have been exhausted. This provision is highly valued by disabled employees, who feel that it makes their position more secure (Oyen, 1989) but it also has the unintended effect of making employers reluctant to hire disabled workers because they are (wrongly) viewed as impossible to dismiss. Severely disabled people (but not those ‘on the same footing’) are also entitled to an additional five days paid leave each year, which may tend to deter potential employers (Winkler, 1996). Between September 1989 and December 1990, employers in Sweden were required to pay a temporary levy of 1.5% of the wage bill to a Working Life Fund. This was used for rehabilitation measures for employees with long-term health problems, measures to reduce sick leave absence, and investments to secure improvements to work environments which were desirable but not mandatory under existing legislation (Thornton and Lunt, 1997).

Work capacity and attitudes to employment While a person’s ability to work may be affected by their disability, this is by no means inevitable. Even where disability restricts the amount or the type of work which can be undertaken, this does not mean that an individual is incapable of all work. Table 3 shows that although over four fifths of disabled people in the UK report some limitations on

46

Employment and working life

Table 3: Disability and work capacity (Britain and Germany) (%) Disabled people in Britain (n=733) reporting Work capacity is limited by disability Work capacity unaffected by disability Unable to work at all Disabled people in Germany (n=626) assessed as under 30% 30 to 49% 50 to 80% 81 to 99% 100%

85.6 11.6 2.7 5.9 23.3 57.4 2.2 11.2

Source: BHPS, 1991; GSOEP, 1991; original analysis

Table 4: Attitudes to work among those not currently working (Sweden) (%) % reporting* Would like a job Unable to work No suitable jobs available Work does not pay Would lose pension

Disabled (n=116) 15.2

Non-disabled (n=62) 19.6

All (n=178) 17.3

90.6** 27.3 27.3 36.4

49.6** 25 33.9 21.7

70.6 25.4 32.9 23.9

82

83.3

Better off not working 90.9 * sums to more than 100% as multiple answers possible ** significant at the 99% level Source: Level of Living Survey, 1991; original analysis

their capacity for work, fewer than 3% consider themselves incapable of any paid work at all, and over 10% report no effects on their work capacity. By definition, all the German sample of disabled people have some limitation of work capacity, since the ‘disability’ variable refers to occupational disability. The vast majority are assessed at 50% or over (the group which is recognised as having special needs for employment measures under German disability legislation), but only 11% are deemed incapable of any work at all. There is not a comparable variable which can operate as a measure of work capacity in the Swedish Level of Living Survey, although people who are not currently in work are asked about their attitudes to work and the reasons why they are not working. As Table 4 demonstrates, disabled and non-disabled people in Sweden who are not working hold similar views regarding work. The only significant difference is that disabled people are more likely to define themselves as unable to work. However, there is considerable scope for bias in the way this question is asked, as the questionnaire instructs interviewers not to ask where it

47

Working for a living?

Table 5: Most important reason for working (Britain) (%) Disabled (n=249) 3.7 47.8

Non-disabled (n=4,493) 3.6 48.8

Money for extras Money for self People’s company

11.0 13.2 1.5

9.1 12.9 2.9

Enjoy working Follow my career Other reason

11.0 6.6 5.1

12.3 8.3 2.2

Working is normal Money for essentials

Source: BHPS, 1991; original analysis

Table 6: Prevalence of disability among different age groups Germany (n=675)

Britain (n=733)

Age 16-25 Age 26-35 Age 36-45

2.2 3.1 5.9

1.9 2.2 4.2

3.3 3.6 5.8

Age 46-55 Age 56-64

11.4 28.0

7.1 9.8

10.3 19.7

% disability among age group

Sweden (n = 373 )

Source: GSOEP, 1991; BHPS, 1991; Level of Living Survey, 1991; original analysis

appears obvious that the person cannot work, an approach adopted in over two thirds of cases, so that the results probably reveal more about the attitudes of the interviewer than those of the disabled respondent. There is also some ambiguity between the two variables which deal with whether work ‘would pay’ and whether the person is ‘better off overall’ not working. Disabled people and non-disabled people in Britain also hold very similar attitudes to work, as Table 5 shows. For both groups, the primary orientation appears to be financial rather than normative; most people say that they work for money for essentials,‘extras’ or personal spending, rather than because work is normal or enjoyable. One could therefore hypothesise that exclusion from paid work is detrimental mainly because it reduces living standards, and not because of the social benefits associated with employment. Disability is more common among older age groups, so that both age and disability will affect the person’s employment prospects, influencing both employers’ attitudes and their own expectations and attitudes towards work. Table 6 shows the prevalence of disability by age group

48

Employment and working life

Table 7: Current labour market status by gender and disability (Britain) (%) Non-disabled men (n=3,536)

Disabled men (n=331)

Non-disabled women (n=3,940)

Disabled women (n=402)

Employed Self-employed Unemployed

64.0 14.7 10.0

36.8 6.9 6.9

64.2 4.5 4.4

38.4 5.4 3.6

Retired Long-term sick Family care

3.3 0.7 0.3

6.9 34.5 0.0

1.6 0.5 19.9

2.7 20.5 22.2

Student Other

6.1 0.9

6.9 1.1

4.0 1.0

6.3 0.9

Source: BHPS, 1991; original analysis

in the three countries. Despite differences in the definition of disability, which mean that there are large variations in the proportions of people classified as disabled between the three countries, the same pattern is common to all, with the incidence of disability rising steeply from the age of 45. This means that labour market prospects for a substantial proportion of older workers are affected by disability as well as age.

Participation in the labour market Disability is associated with absence from the labour market to a varying degree. As noted earlier, registered unemployment levels among disabled people are depressed by the availability of specific disability benefits which exclude them from the statistical count. Disability may also affect whether an individual works as an employee or is self-employed. Disabled men and women also tend to have different patterns of participation in the labour market, reflecting different patterns of participation among men and women in the population more generally. Table 7 shows the labour market status of men and women in Britain. There is a strong association between disability and current labour market status in Britain; fewer than 40% of disabled people are employed, compared with almost two thirds of non-disabled people. Over a third of disabled men describe themselves as ‘long-term sick’, compared with only 20% of disabled women. Men and women in Britain have similar patterns of labour market participation, although women are more likely to be employed part-time, and are much more likely to be involved in providing family care, whether for children or for older people and disabled people. Disabled women are just as likely as non-disabled

49

Working for a living?

Table 8: Modal (26 weeks or more) labour force status in 1990 (Sweden) (%)

Employed full-time Employed part-time

Non-disabled men (n=2,003) 71.8** 4.2

Self-employed Student Pension

9.1 2.3** 3.4**

Unemployed Other

1.2 7.9

Disabled men (n=304) 57.2** 5.9 8.2 2.6** 20.4** 3.0 2.6

Non-disabled women (n=1,816) 49.0** 31.7 4.0 8.3** 3.9** 0.8 2.4

Disabled women (n=298) 35.6** 25.2 3.4 4.4** 28.5** 0.3 2.7

** significant at the 99% level

Source: Level of Living Survey, 1991; original analysis

women to be involved in family care. This can be understood in contrasting ways; on the one hand, a woman may be unable to escape the ‘burden’ of caring for others even when she is disabled; on the other, disabled women may be seen as having access to a valued social role even when they are not participating in paid employment. This may have importance consequences for the relationship between work and well-being. Table 8 shows the main labour force status of Swedish respondents in the year before the survey. Employment rates for both men and women are higher than in Britain, and there is considerably less difference between disabled and non-disabled people, although this remains statistically significant; over 70% of disabled men and over 60% of disabled women are in work. Very few men in Sweden work part-time, although disabled men are slightly more likely than non-disabled men to do so; around a quarter of disabled women work part-time, compared to almost a third of non-disabled women. Men are twice as likely as women to be in self-employment, and disabled people are slightly more likely than non-disabled people to be self-employed. Almost 30% of disabled women receive disability pension, compared to just over 20% of disabled men, reflecting their lower employment rates. Table 9 shows the current employment status of men and women in Germany. Employment rates for non-disabled men are higher than in either Sweden or Britain, while those for disabled men are higher than in Britain, but much lower than in Sweden. Women are far less likely than men to be in employment, and disabled women are particularly likely to be out of the labour market; almost two thirds are not employed. Although it is possible for disabled people to claim a partial disability

50

Employment and working life

Table 9: Current labour force status by gender and disability (Germany) (%)

Full-time work Part-time work Other (training, military service, leave, etc) Not employed ** significant at the 99% level

Disabled men (n=398)

Non-disabled men (n=3,553)

Disabled women (n=237)

Non-disabled women (n=3,554)

47.5** 1.8

77.7** 1.1

23.6** 9.7**

33.8** 17.4**

1.8** 49.0**

7.7** 13.6**

3.9** 62.8**

12.0** 36.9**

Source: GSOEP, 1991; original analysis

Table 10: Part-time workers by disability and gender (%) Country

Non-disabled Men Women

Men

Sweden Germany Britain

11.5 8.0 13.8

17.5 12.5 28.6

88.5 92.0 86.2

Disabled Women 82.5 87.5 71.4

Source: BHPS, 1991; GSOEP, 1991; Level of Living Survey, 1991; original analysis

pension and work part-time, only a minority appear to do so; disabled men are only slightly more likely than non-disabled men to be working part-time, and disabled women are half as likely as other women to work part-time. We have noted that disabled people do not seem to more likely than non-disabled people to work part-time, despite the possibility of combining work and benefits. This is probably related to the structure of labour market demand. Most part-time work in Sweden is in highly segregated service industries, which may be a limiting factor. Women account for around nine out of ten part-time workers in all three countries, as can be seen from Table 10. Disabled men are slightly more likely than non-disabled men to be working part-time in all three countries, although fewer than one in five do so, except in Britain, where over a quarter of disabled people working part-time are men. Disabled women are slightly less likely than non-disabled women to be working part-time in all three countries. Disabled people who are in employment in Sweden and Britain, whether part-time or full-time, work very similar hours to their nondisabled peers; there are no statistically significant differences in the average number of hours worked, as can be seen in Table 11. Part-time

51

Working for a living?

Table 11: Actual and desired hours of work in Sweden and Britain (%) Britain Sweden Disabled Non-disabled Disabled Non-disabled Full-time work Part-time work (less than 30 hours) Wants to work same hours

38.0 13.8 56.6

39.6 16.3 60.5

41.1 25.4 79.9

40.6 25.7 82.4

Wants to work fewer hours Wants to work more hours

25.3 18.1

31.1 8.4

13.1 7.0

10.7 7.0

Source: BHPS 1991, Level of Living Survey 1991, original analysis

Table 12: Hours of work (Germany) Average weekly contractual hours Average weekly hours worked Desired weekly hours

Disabled (n=272) 36.3 39.0

Non-disabled (n=4,356) 35.8 38.9

35.0

34.8

Source: GSOEP, 1991; original analysis

workers in Sweden work longer hours than in Britain, around 25 hours a week on average, as against 14 to 16 hours in Great Britain. This may have implications for both the level of earnings and conditions of employment, such as rights to paid holidays, sick leave and pension entitlement. Disabled and non-disabled people in Sweden are also equally likely to be happy with their hours of work. Around four fifths of employees in Sweden reported being satisfied with their present hours; slightly more disabled than non-disabled people would prefer to work fewer hours, and only around 7% of both groups would prefer to work longer hours. Fewer people in Britain are happy with their existing hours of work. A quarter of disabled people, and almost a third of non-disabled people, would prefer to work shorter hours, although almost 20% of disabled people express a wish to work longer hours than they do at present. Table 12 shows the average contractual and actual hours worked in Germany. Both disabled and non-disabled workers report working slightly longer than their contractual hours and express a wish to work slightly fewer, but there is no real evidence of a demand for changes in working hours. By contrast, Table 13 shows an unmet demand for part-time work among disabled and non-disabled men and women who are not currently working. Disabled and non-disabled women in Germany are equally

52

Employment and working life

Table 13: Percentage seeking full-time or part-time work (Germany)

Full-time Part-time Either Not sure ** significant at the 99% level

Disabled men (n=35)

Non-disabled men (n=358)

Disabled women (n=20)

Non-disabled women (n=666)

48.6** 28.6** 17.1

81.8** 3.4** 8.9

45.0 55.0 0

26.3 54.8 9.3

5.7

5.9

0

9.6

Source: GSOEP, 1991; original analysis

likely to be seeking part-time work, but disabled men are much more likely than non-disabled men to be looking for part-time work. However, the numbers involved are too small to be entirely confident of their validity.

Conditions of employment The extent to which employment is a positive influence on well-being is determined by the level of material and non-material rewards from working, including the level of pay and benefits, job security, the content of the work itself, levels of autonomy enjoyed and relationships with employers and fellow workers. These aspects of work are explored below.

Earnings Table 14 compares the gross earnings levels of disabled and non-disabled workers in all three countries. Disabled men in Britain earn less than non-disabled men, whereas disabled women earn slightly more than non-disabled women. This is probably because women’s earnings as a whole are depressed by the low earnings of those who return to the labour market after having children (Rake, 1999). Differences between the median earnings of disabled and non-disabled people are smaller in Germany than Britain. As in Britain, disabled women have higher average earnings than non-disabled women. This is partly attributable to their under-representation in part-time work, as noted above, but may also be due to self-selection (or labour market demand) in respect of higher earners. In Sweden, disabled men and women both earn less than nondisabled people of the same sex, although the differences between disabled and non-disabled women are small. Non-disabled men have the highest level of earnings, as in the other two countries.

53

Working for a living?

Table 14: Annual average gross earnings by gender and disability

Britain (£) Mean Median Germany (DM) Mean Median Sweden (Kr) Mean Median

Disabled men

Non-disabled men

Disabled women

Non-disabled women

11,182.77 10,000.00

14,822.45 13,000.00

8,204.30 7,700.00

7,356.00 6,049.00

42,777.43 42,006.00

46,334.39 43,400.00

28,135.16 24,800.00

25,159.95 23,400.00

142,600 141,500

158,431 155,500

102,388 103,700

107,724 109,950

Source: BHPS, 1991; GSOEP, 1991; Level of Living Survey, 1991; original analysis

Other conditions of employment Table 15 looks at the status of current employment in Britain. Although over nine out of ten employees were in permanent jobs in 1991, disabled people were slightly more likely than non-disabled people to be employed in temporary and seasonal work, and slightly less likely to be working on a fixed-term contract. This trend may have continued, as there has been a rise in short-term and temporary work in Britain over recent years (Commission of the European Communities, 1997). Over half of non-disabled people were working in jobs which offer prospects of promotion, as against only two in five disabled people. Table 16 examines the extent of autonomy over the content and methods of working enjoyed by workers in Sweden. Disabled and non-disabled people have almost identical scores, suggesting that they are equally likely to be employed in work which allows them to use initiative and ability. Table 17 looks at the working environment in Sweden. Scores on three headings are compared. These measure flexibility (the extent to which time is monitored, including the need to use a punch clock, flexible working hours and the ability to take a break when required), poor conditions (exposure to noise, dust, toxins and so on) and Table 15: Status of current job (Britain) % reporting Permanent Temporary/seasonal Fixed term contract Work offers promotion prospects Source: BHPS, 1991; original analysis

54

Disabled 92.7 6.3

Non-disabled 91.5 4.4

1.0 42.7

4.0 52.9

Employment and working life

Table 16: Extent to which uses skills and makes decisions at work (Sweden) Mean scores (1= most autonomy, 5=least) Uses education in carrying out job Able to decide on which tasks to carry out Able to decide how tasks are carried out

Disabled n= 357 2.3

Non-disabled n= 3,024 2.3

2.2 2.8

2.1 2.6

Source: Level of Living Survey, 1991; original analysis

Table 17: Quality of working environment in Sweden Mean scores (6=highest) Disabled workers Non-disabled workers

Flexibility 2.9 3.1

Poor conditions 2.8 2.5

Demanding work 2.0 1.7

Source: Level of Living Survey, 1991; original analysis

demanding work (including the requirement to lift heavy loads, work in uncomfortable positions, or undertake mentally taxing or stressful work). Although there are no statistically significant differences, it can be seen that disabled people have slightly lower levels of flexibility in the workplace, and are slightly more likely to be working in a demanding job or one which exposes them to health hazards. Disability is, of course, one possible consequence of working in such an environment. Disabled people in Sweden report slightly lower levels of satisfaction with their work than non-disabled people, as Table 18 shows, but over 80% of both groups describe themselves as satisfied or very satisfied with their job. The situation is similar in Britain, with disabled and non-disabled people reporting similar levels of satisfaction on various aspects of work, but somewhat less satisfaction with pay, use of initiative and promotion prospects, as Table 19 shows. Table 18: Reported levels of job satisfaction (Sweden) % reporting Very satisfied Satisfied Neither satisfied nor dissatisfied Dissatisfied Very dissatisfied

Disabled (n=208) 41.3 43.3

Non-disabled (n=3,589) 42.9 45.2

11.1 3.4 1.0

8.5 2.3 1.1

Source: Level of Living Survey, 1991; original analysis

55

Working for a living?

Table 19: Satisfaction with various aspects of work (Britain) Mean scores (7=most satisfied) Relations with boss

Disabled 5.5

Non-disabled 5.6

Hours Pay Security

5.3 4.1 5.4

5.3 4.5 5.2

Use of initiative Promotion prospects Work itself

5.6 3.8 5.7

5.8 3.9 5.7

Source: BHPS, 1991; original analysis

Table 20: Reported levels of overall job satisfaction (Britain and Germany) Mean scores Disabled

Germany (10=most satisfied) 6.8

Britain (7=most satisfied) 5.3

Non-disabled

7.3

5.5

Source: GSOEP, 1991; BHPS, 1991; original analysis

Table 20 compares the overall job satisfaction scores of people in Germany and Britain. There are greater differences between the satisfaction levels of disabled and non-disabled people in Germany, but these are not large in either country.

Employment of disabled people over the life course Although there is a strong relationship between disability and current employment status, especially in Britain, this does not hold when looking at employment over the life course. Much disability is acquired when the individual already has some experience of working. Table 21 shows the proportion of people who are not working at present who have never had paid work; this is under 2% in both Sweden and Germany. The much higher proportions of both disabled and non-disabled people who have never worked in Britain may in part be attributable to a relative lack of emphasis on active labour measures for unemployed and disabled people. Table 22 shows that the vast majority of disabled people in Germany who are not currently working have given up the idea of finding work. Fewer than one in five disabled men, and only 14% of disabled women, think that they will or may have employment in the future. These

56

Employment and working life

Table 21: Percentage of those not currently working who have never had paid employment Disabled Non-disabled ** significant at the 99% level

Germany

Sweden

Britain

1.1 1.6

0.3 0.7

16.3** 28.9**

Source: Level of Living Survey, 1991; GSOEP, 1991; BHPS, 1991; original analysis

Table 22: Attitudes to work among those not currently working (Germany) Disabled Non-disabled men men % responding (n=190) (n=507) Whether respondents intend to work in future Yes 12.6** 67.5** Maybe 6.3** 3.9** No 81.1** 28.6** How easy it would be to get another job Easy 2.6** 31.0** Difficult 10.9** 34.7** Almost impossible 16.1 17.5 Retired 70.3** Whether able to start work immediately Yes 48.6 No 51.4

Disabled women (n=156)

Non-disabled women (n=1,423)

9.0** 3.9** 87.1**

28.7** 18.3** 53**

3.2** 14.1** 34.6

19.1** 45.7** 26.8

16.9**

48.1**

8.5**

34.7 65.3

35 65

29.7 70.3

** significant at the 99% level

Source: GSOEP, 1991; original analysis

intentions may be heavily influenced by an assessment of the prospects of finding suitable work. It can be seen that half of disabled women and over two thirds of disabled men have accepted that they will not find work again and define themselves as retired. Women are more likely than men to define themselves as being in the labour market but finding it almost impossible to obtain work; around a third of disabled women, and a quarter of non-disabled women, fell into this category. People who are not currently employed are also asked whether they would be able to start a job immediately if one became available. Disabled men were more likely than either women or non-disabled men to say that they would start work immediately, although less than half responded positively to this question. Table 23 shows the attitudes of unemployed job seekers in Britain towards the type of work they are looking for. Slightly under a third of disabled people say that they would like regular paid work, as compared

57

Working for a living?

Table 23: Job search among those not currently working (Britain) (%)

Would like regular paid work Looking for particular type of work Would take any work

Disabled men 32.5

Non-disabled men 39.0

Disabled women 32.7

Non-disabled women 48.9

58.8 41.2

46.6 53.4

41.7 58.3

53.8 46.2

Source: BHPS, 1991; original analysis

to almost half of non-disabled women and just under 40% of nondisabled men. Disabled men and non-disabled women are most likely to be looking for a particular type of work, while the majority of disabled women and non-disabled men say they would take any job available.

Which disabled people are in employment? Overall, there is little evidence that disabled people who are in work are dissatisfied with either their hours of work or their conditions of employment in any of the three countries. However, there is some evidence that disabled people who are seeking part-time work may be excluded from employment because of the lack of demand in the labour market, especially if they are men. Despite the existence of partial capacity benefits, which are intended to enable disabled people to work parttime, in Sweden and Germany, there is little evidence that these have a significant effect. Women tend to be over-represented in part-time work, reflecting the gendered structure of labour market demand. Parttime employment among disabled men is highest in Britain, probably because of the growth of flexible employment in recent years. A minority of those currently in part-time employment also report a desire to work more hours, although the reasons for this are not given, and are as likely to be connected with financial pressures as with the work itself. Discriminant analysis, a statistical technique for predicting group membership (see Appendix), was used to explore the factors influencing the employment rates of disabled people in each country. In Britain, the level of education and general health status are the most important single factors affecting whether a disabled person will be in employment or not. Combining information on a number of factors enables employed status to be predicted in almost two thirds of cases. In addition to health status and qualifications, age and the number of children has a significant effect, although gender was not important. Those least likely to be employed are older, and poorly qualified, with several dependent

58

Employment and working life

children and in poor general health. In Sweden, discriminant analysis was able to predict the employment status of disabled people in 68% of cases, on the basis of five factors: age, sex, functional disability, education and the number of children. In contrast to Britain, those most likely to be employed are older men with a functional disability, as opposed to a long-term health problem. In Germany, the key factors influencing the employment of disabled people are the degree of assessed disability, age and gender; together, these three factors allow for successful prediction of employment status in 70% of cases; younger, less severely disabled men are most likely to be in work. Surprisingly, educational qualifications had no additional predictive effect. We have confirmed that most disabled people are capable of at least some work, and that disabled and non-disabled people have similar attitudes and orientations towards work, but that disabled people generally have lower rates of employment, and that some disabled people have poorer working conditions than non-disabled people. How important is access to work in determining the quality of life experienced by disabled people, and what consequences does exclusion from employment have? The following chapter reviews policies relating to income maintenance and personal assistance. It describes the living standards of disabled people, and considers the role of employment in securing an adequate income. It also examines the rather limited data available on disabled people’s social and political activity, and attempts to assess the relative contributions of work and income in enabling their effective participation in society. Notes 1

It should be noted, however, that there are rules which allow some flexibility in calculating when the quota has been fulfilled depending on the nature of the employee’s impairment. 2

Whether an adjustment is reasonable is to be determined with reference both to the effectiveness of the measure in overcoming the disability and the costs to the employer.

59

FOUR

Benefits, personal assistance and living standards Introduction Disabled people in each of the three countries may have lower incomes than their non-disabled peers, because they are not working, because they are working fewer hours, or because they are receiving lower wages. Disabled people also incur additional costs as a result of their disability. These fall into two broad categories: additional expenditure on items which are consumed by everyone, such as fuel and transport, and those which are a specific result of disability-related needs, such as payment for personal or domestic assistance or the purchase of particular items of equipment. This chapter compares income maintenance and personal assistance policies in the three countries, and considers the incomes of disabled people and the standard of living they enjoy, using a variety of monetary and non-monetary indicators of poverty. Although there is very little data on expenditure in any of the three surveys, comparison of the standards of living achieved by disabled and non-disabled people at the same income level provides some indication of the presence, and effect, of additional costs. The analysis also explores links between income and social participation, in order to assess the relative influence of disability and income.

Income maintenance policies for disabled people Social security policy in Germany has historically been concerned with maintaining status distinctions between different groups, owing to its origins in the trade guilds of skilled workers (Tampke, 1981; Ginsburg, 1992). There is a strong emphasis on the primacy of work, and both the right and the duty to work are enshrined within the constitution. The social security system has always tended to play a secondary role in relation to economic aims and this is argued to be the reason for its relatively late postwar expansion (Clasen and Freeman, 1994). The system is strongly insurance-based, and has a strong orientation to norms of

61

Working for a living?

reciprocity and equivalence; there is therefore a strong sense of ‘desert’ as far as benefits are concerned. Benefits received from the system are in strict proportion to former earnings (Wilson, 1993). As might be expected from a system which mirrors labour market divisions, the German social security system is relatively inefficient in reducing inequality, although the actual rates of benefit are more generous than, for instance, Britain (Smeeding et al, 1990). This has been a surprisingly neglected issue in debate about the adequacy of social security payments in Germany (Grunow, 1986). In Sweden, most social insurance benefits are linked to what is known as the ‘base amount’, which is an index of price movements updated periodically in line with the consumer price index. Expenditure on disability policy represents around 5% of GNP, and around half of this is accounted for by Social Insurance benefit payments (Hass and Jonsson, 1994). The growth in numbers in receipt of disability pension has given rise to intense debate, as a variety of commentators have argued that disability retirement is likely to lead to social isolation and passivity as well as reduced financial resources. However, Hedström’s (1987) study, which attempted to test the relationship between employment and social participation by matching 97 people in receipt of disability pension with individuals of the same age, gender and occupation, found that social life, political participation and leisure activities were not adversely affected by disability retirement, although some were restricted by the impairment itself. Within the disability movement generally there has been relatively little analysis of tax and social security issues. Colin Barnes (1991) and Michael Oliver (1990, 1995) have identified the mechanisms which enforce stereotypes of dependency and inability to work. Yet there is sometimes a degree of disparagement of what Berthoud (1995) refers to as ‘the plumbing’. Oliver (1995) argues that in Britain the defence of existing entitlements during the retrenchment of provision in the 1980s was not conducive to the development of positive proposals in the field of social security, and has resulted in a general frustration with welfarist solutions. However, the sheer number of disabled people who rely on such benefits makes their effects of considerable importance to anyone attempting to understand the environment in which disabled people function. The following section describes the main tax and benefit policies affecting disabled people in each of the three countries, and discusses the recent direction of policy change. It compares provision made for the two main functions of disability benefits, earnings replacement and meeting additional costs (Berthoud, 1998). Benefits

62

Benefits, personal assistance and living standards

which exist primarily to provide compensation (for instance, war disablement benefits and industrial injuries benefits) are not compared, because they are complex, and relevant to only a minority of disabled people.

Earnings replacement benefits Following an initial period of sickness benefit paid either by employers or social insurance agencies, disabled people in all three countries are able to claim specific benefits to compensate for their loss of earnings. In Sweden, people aged between 16 and 65 are entitled to disability pension if their working capacity is reduced by at least half. This has two components: a basic rate and a supplementary rate calculated on the basis of the person’s best 15 years earnings, subject to an overall ceiling. Partial awards of benefit (at 25%, 50% or 75%) can be made if the person is capable of some work, either when the person first claims (50% or 75% only) or if they start work at a later date (any of the three rates, depending on the number of hours worked). This is intended to improve work incentives. About one in four payments of disability pension is made at a partial rate, the majority to women (Thornton et al, 1997). As there are no data available on the numbers of those receiving partial disability pensions who are in employment, it is difficult to assess their effects with any accuracy. In practice, few people return to work once they have started receiving pension. There is thus considerable reluctance on the part of the social insurance authorities to pension a younger person (De Handikappade Riksforbund Ung [young people’s section], personal communication, 1995; Almström, 1995, personal communications). The costs of disability pensions have risen steeply over the past 20 years. As in many countries, although there has been an increase in the number of new claims, the main reason for the growth in expenditure is a sharp reduction in the number leaving benefit rolls for employment (Wadensjö and Palmer, 1996). The relatively high rates of benefit in Sweden are also perceived as a disincentive to work by some organisations of disabled people. There are two disability benefits in the German social insurance system. Erwerbsunfähigkeitrent (EU) is a general disability benefit for those who are deemed incapable of earning a regular income from any sort of employment for the foreseeable future (or at least five years, in practice). Berufsunfähigkeitrent (BU) is a partial, or perhaps more accurately an occupational, disability benefit for those whose earnings are assessed at less than 50% of a comparable person’s, because of ill-health or disability.

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Working for a living?

In calculating earnings capacity, reference is made only to employment commensurate with the claimant’s capacities and previous work experience. Entitlement to both benefits is dependent on having paid statutory pension insurance, which covers about 85% of employed earners; civil servants and some low-income groups are excluded, and insurance contributions are optional for the self-employed. It is possible to combine BU with employment, but very few people do and there is very little financial incentive for people to work. For the majority of recipients BU functions as an interim pension pending entitlement to EU after a year (Thornton et al, 1997). Disability benefits are intended to be paid only once the possibilities of rehabilitation have been exhausted, according to the established principle of ‘rehabilitation before pension’, although this does not always happen in practice and recent policy changes have reduced funding for rehabilitation measures (Bolderson et al, 1997; Thornton et al, 1997). Incapacity Benefit is a flat-rate benefit payable to those unable to work because of disability who have paid National Insurance contributions in Britain. It replaced the previous contributory benefit, Invalidity Benefit, which included age-related additions, and an earningsrelated element, in April 1995. This followed an extensive review of expenditure on disability-related benefits, which had increased from £7.3 bn in 1983/84 to £17.7 bn in 1993/94 (Berthoud, 1993). The revised benefit achieves costs savings both by reducing the level of benefit which is paid during the first six months of the claim and by tightening eligibility criteria. Research into the characteristics of Invalidity Benefit recipients (Lonsdale et al, 1993) has demonstrated that a large majority (around 75%) are destined not to return to work. In both Germany and Britain, large numbers of people are not covered by disability benefits, if they have never worked or have an interrupted work history, and have to claim social assistance. In Sweden, a person who has never worked, and is thus only entitled to a basic pension, will be paid a supplement to bring them up to a minimum income level, to avoid the need to claim social assistance. In Britain, disabled people who have been unable to work for six months before the age of 20 and those assessed as having a disability of 80% or more are able to claim Severe Disablement Allowance, a non-contributory benefit. The main beneficiaries are disabled people who have never worked and those with an interrupted work history, often married women, although the disability threshold excludes many potential claimants. It is being abolished for new claimants with effect from April 2001. Young people

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Benefits, personal assistance and living standards

who qualify by the age of 20 (or 25 in specified circumstances) will qualify for Incapacity Benefit instead (Disability Alliance, 2000). In Sweden, responsibility for decisions on disability benefit claims rests with the social insurance officer, whose decision is based on the reports of a number of experts: the claimant’s physician, an insurance medical adviser, the insurance office rehabilitation expert, a vocational expert and any employer who has experience of the claimant’s work (Thornton et al, 1997). In Britain, the revised assessment for Incapacity Benefit explicitly excludes labour market factors and aims to create an objective test of capacity for work, which is based solely on medical criteria (Benefits Agency, 1993;Aylward, 1995). The test has been widely criticised by welfare rights organisations, which argue that it measures functional capacity only and has little relevance to work ability (George, 1995a).

Social assistance In common with other industrialised countries, Germany has experienced large rises in the number of people claiming social assistance in recent years; some of this growth is related to increasing claims from disabled people (Eardley et al, 1996). Disability, in particular the need for personal assistance, is linked to both an increased risk of receiving social assistance and a longer period of receipt (Voges and Rohwer, 1992). Social assistance is the responsibility of the Länder, within framework legislation set at Federal level, and is administered using a case-work approach which is considerably more stigmatising and suggestive of charity than insurance-based payments. As in Sweden, and in contrast to Britain, social assistance may involve the provision of services as well as cash transfers. Social assistance payments are frequently made to cover additional costs of disability as well as the costs of personal assistance or nursing home care. In an attempt to stem the spiralling costs of residential care, insurance against the need for nursing home care became mandatory early in 1994 (see below). Although social assistance receipt has increased in Sweden in recent years, it remains very low by international standards; very few disabled people are dependent on social assistance (Eardley et al, 1996; Almström, personal communication, 1995).

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Working for a living?

In-work benefits In Sweden, rehabilitation allowance, which was introduced in 1992, is payable to people undertaking specialist programmes of rehabilitation, and was originally at a higher rate than sickness or disability benefits as an incentive to participate in rehabilitation and to promote an early return to work, but has subsequently been reduced in value (Thornton et al, 1997). There are a variety of rehabilitation allowances in Germany, which until 1996 were available as of right to all disabled people undergoing professional training or vocational rehabilitation. From 1997, these are only available to those registered as severely disabled, and their value has also been reduced to the level of unemployment benefits (Thornton et al, 1997). While in Sweden and Germany it is possible to combine receipt of disability benefits with employment, Britain is the only one of the three countries which has a specific benefit aimed at encouraging disabled people to take up paid employment. Disabled Person’s Tax Credit was originally introduced as Disability Working Allowance in 1992, with the aim of providing incentives for disabled people to take up part-time work. From October 1999, it is payable as a tax credit in the pay packet. It is available to disabled people with limited work capacity (defined as receiving Disability Living Allowance, Invalidity Benefit or Severe Disablement Allowance) and who work for at least 16 hours a week. Combined with the means test, this effectively confines its scope to those on low hourly rates of pay. Disabled Person’s Tax Credit aims to counter the risk of taking up employment which may fail by providing a guarantee that the disabled person can return to their previous benefit at any time during the first two years of employment. The vast majority (80%) of those who have claimed its predecessor Disability Working Allowance were already in paid work rather than having been attracted to work by the benefit, and the absence of labour market opportunities has also been noted as a major factor limiting take-up (Rowlingson and Berthoud, 1996).

Assistance to meet extra costs There are several ways in which disabled people incur additional costs: by the purchase and/or running costs of particular pieces of equipment, or of adaptation of the home, by increased costs of normal living expenses such as food, fuel and clothing, personal care and transport needs, and medical needs (Berthoud, 1993). Assessing the costs of disability is

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Benefits, personal assistance and living standards

inevitably contentious. One major problem in attempting to estimate the amount of these costs directly by an analysis of spending lies in the fact that the level of income inevitably constrains what is spent. As Abberley (1992) argues, compensating the individual is only one possible response; another approach would be to tackle the causes of additional expenditure at a societal level. For the purposes of devising an additional costs benefit it is necessary to decide the scope of additional expenditure to be covered and to devise consistent and effective mechanisms for measuring the costs involved. There is also a balance to be sought between meeting individual needs and seeking to meet average needs in as cost-efficient a manner as possible. Disabled people in Germany are entitled to a tax allowance (increasing with the degree of assessed disability) intended to provide compensation in respect of additional living costs. This was introduced in 1974, and has not been uprated. As with all tax allowances, the value is greatest for those on higher income levels; for the majority the sums provided (around DM 200 per month) are thought to be too low to provide either an incentive to work or a realistic contribution to additional costs (Thornton et al, 1997). Disabled people in Germany are also entitled to tax refunds in respect of travel to work, although eligibility criteria are very tightly defined; even among those who are severely disabled, only about 80% qualify (Thornton et al, 1997). Means-tested grants are available to meet the costs of buying a car, or obtaining a driving licence for work purposes. Small grants are also available regardless of income for adaptations to a vehicle for those assessed as severely disabled. About 950 chauffeur schemes exist throughout Germany for people who are unable to use public transport or taxis; their use is not limited to work travel. The costs of these services are met by social assistance (Landwehr, 1992). There is a general requirement in Swedish law that public transport must be made accessible to disabled people. However, this is progressing only slowly. Municipalities provide some discretionary assistance with travel costs, either by allowing free use of taxis or by providing specialised forms of transport. Access to these schemes is restricted, as only a certain distance or number of journeys is permitted, and fewer than 15% of users are of working age. Certain local authorities provide bus services specifically aimed at disabled people, as in Britain. There is also a national scheme which allows disabled people to travel anywhere in Sweden for the cost of a second-class rail ticket, using whatever form of transport is most appropriate for their needs (Swedish Institute, 1997). Disabled people who have mobility problems and are unable to use public transport

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Working for a living?

are entitled to an allowance for the purchase or adaptation of a car in certain circumstances. The allowance is paid every seven years to those who are eligible, mainly people under 65 who need a car for employment purposes, disabled people under 49 who are able to drive, disabled parents of children under 18 and parents of disabled children (National Social Insurance Board, 1993). In Sweden, there is also a benefit, Disability Allowance, for people aged between 16 and 65 years who have been functionally impaired for at least a year, and who require additional help in everyday life and in order to work, or incur substantial extra costs in daily living. People who are blind or whose hearing is severely impaired have automatic entitlement. The amount varies with the extent of assistance required, and it is generally not payable to people living in institutions. Disability allowance may be paid as a stand-alone benefit, or as a supplement to disability pension. Disability allowance is not means-tested; income and assets are irrelevant. It is not taxable, and may be claimed irrespective of paid employment (Swedish Institute, 1997). In Britain additional costs are intended to be met by Disability Living Allowance, a non-means-tested, non-taxable benefit, which replaced two similar but less generous, benefits, in 1992. Disability Living Allowance has two elements, covering personal assistance needs (payable at one of three levels) and mobility needs (payable at one of two levels). It is geared to meeting average needs and is relatively inefficient at meeting the needs of those who are most severely impaired (Sainsbury et al, 1995). One evaluation of Disability Allowance concluded that although the range of needs covered had increased, resulting in increased numbers of successful claims, it remains poorly targeted, in the sense that people with similar disabilities, working abilities and additional costs may qualify or fail to do so in an apparently arbitrary fashion (Sainsbury et al, 1995). In addition, people with similar disabilities may be receiving different levels of benefit.

Provision to meet personal assistance needs Services for personal assistance In Germany, the principle of subsidiarity requires that services should only be provided where these cannot be provided by the family or the voluntary sector (Brauns and Kramer, 1989; Anttonen and Sipilä, 1995), and a wide range of social services (for instance home helps and other forms of personal assistance) is provided by voluntary sector groups

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(Clasen and Freeman, 1994). Many social welfare services are financed by church taxes, which remain a universal component of income tax in Germany (Bahle, 1998). The dominance of religious groups in the field of social care has been argued by Wilson (1993) to institutionalise conservative ideas of family obligation and responsibilities. It may also have the effect of institutionalising a ‘charitable’ orientation in the provision of services to disabled people. A great many of those working in the social care field are volunteers, for instance young men who are doing voluntary work as an alternative to military service (Wilson, 1993). The main implication of this is a lack of professional training among care workers. Alongside the traditional charities, which have a neocorporatist role in Germany (Lorenz, 1994) there is also a wide range of self-help groups which have a more radical outlook (Grunow, 1986; Trenk-Hinterberger et al, 1993). Their development has been linked with a growing move towards debureacratisation in Germany. It is estimated that only around one third of disabled people are active in organisations of disabled people. The organisations themselves have been described as pursuing strategies of compromise and consensus, rather than adopting a ‘pressure group’ approach (Hammerschmidt, 1992). Alber (1995) has argued that both health insurance and the dominant role of private and voluntary organisations in Germany undermine the motivation to extend state funding for services to older and disabled people. In Sweden, disabled people requiring personal assistance for 20 hours or more per week have a legal right under the 1994 Act Concerning Support and Service for Persons with Certain Functional Impairments (LSS) either to be provided with assistance free of charge by the municipal authority or to receive a cash payment enabling them to employ personal assistance directly. In addition to the differences in funding arrangements, this Act creates a new standard for the assessment of personal assistance needs. Whereas municipalities are required to ensure that the disabled person is able to enjoy a ‘reasonable’ quality of life, the new Act specifies a ‘good’ quality of life, although both are required to take account of assistance needs in respect of leisure and cultural activities. Moreover, while the municipalities would normally expect members of the immediate family to act as primary carers, this assumption is not now made in cases where care is required for 20 or more hours per week. Pressures to review the scope of the legislation on cost grounds arose almost immediately after its implementation, as the costs exceeded initial estimates by 1 billion Kr. Disability organisations had argued that the original cost estimates were unrealistically low, since they were based

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Working for a living?

on an average assistance needs rather than individual cases. Concern has centred on the issue of family members, as it is difficult to know whether hours are being correctly reported, and because this may make it difficult for a disabled person have a free choice about whether to leave the parental home. There is also concern for people at the ‘borderline’ of the 20 hours requirement. Since people above this limit are centrally-funded, there is a clear incentive for cash-strapped municipalities to assess people at a high level. If this assessment is rejected by the social insurance office the disabled person is caught between the two agencies until a decision is reached (De Handikappade Riksforbund, interview data, personal communication, 1995). While proposed restrictions on the right to personal assistance have so far been successfully resisted, it appears increasingly likely that payments for personal assistance may eventually be means tested. Means tests for transport services have already been introduced in some municipalities (www.independentliving.org/ENIL, July 2000). Cash payments to disabled people, of the type now available under LSS, were originally pioneered by Stockholm Independent Living Group (STIL), established in 1987 as a pilot scheme, and which has become a model for a number of cooperatives throughout the country. They were very unpopular with both professionals and the political Left, and seen as indicative of moves towards privatisation (Ratzka, 1986). Despite these concerns, the development of personal assistance services does not seem to have been at the expense of the terms and conditions offered to the assistants, who enjoy the same rights to paid leave, maternity leave and so on as other employees, and are entitled to be paid for travelling time and waiting time. De Handikappade Riksforbund (personal communication, 1995) report that many municipalities have taken advantage of the LSS leg islation to change existing bondeservice accommodation (accommodation with municipally-funded assistance provided) into personal assistance schemes. This has allowed them to recoup the costs from social insurance but has left disabled people with similar inflexible service arrangements as before and has been challenged by referring cases to the local government Ombudsman. In Britain, local authorities have been responsible for funding the assistance needs of people up to a limit of £200 per week since 1993. People of working age whose care costs are greater than this can apply to the Independent Living (1993) Fund for the balance, which must not exceed an additional £300 per week. Claimants must also have less than £8,000 in savings, be receiving the highest rate of Disability Living

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Allowance care component and either be in receipt of Income Support or have a comparable income. Only the first £30 of any earnings are ignored, creating severe work disincentives. These restrictive conditions have greatly reduced the number of people eligible (Kestenbaum with Cava, 1998). In addition, nearly a third of all rejected applications in the first year were refused because of the failure of the local authority to meet the requirement to supply the first £200 per week of funding (Eaton, 1994). Until recently it was illegal for local authorities (except those in Scotland) to make direct payments to disabled people for the purchase of personal assistance. Subsequent legislation permits, but does not require, local authorities to make such payments, and their availability varies geographically. The marketisation of social service provision in Britain has evolved largely in response to a Right-wing, cost-cutting agenda on the part of government, but it has also enabled disabled people to develop alternatives to bureaucratic and inflexible forms of service provision. Trades unions and Left-wing commentators had tended to attribute service deficiencies to lack of resourcing, and there has been a reluctance to acknowledge the structural defects of public services. Carpenter (1994) argues that the campaign for civil rights for disabled people has posed these as antithetical to social rights, whereas in fact there is a continued need for public intervention to mitigate the inequalities of the market. However, there are few indications of how the potential conflicts of interest between service users and service providers are to be resolved. As both Morris (1994b) and Hudson (1994) argue, the implementation of community care policies, while couched in the language of user choice and control, represents a reassertion of professional control over access to services. In contrast to Sweden, the funding arrangements for personal assistance in Britain do not cover all the necessary expenses incurred, for example advertising, insurance, employer’s National Insurance contributions and holiday, sickness and maternity pay. As a result some disabled people rely on informal arrangements, including paying at less than the lower limit for national insurance, which are not always in the best interests of either the disabled person or their assistant (Lakey, 1994; Ungerson, 1997).

Charges for personal assistance services In Germany, charges for personal care provided by religious or voluntary sector groups are made on the basis of a means test (Wilson, 1993). Means-tested charges are also applied in Sweden, for those whose

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assistance needs are less than 20 hours per week and receive services from the municipality. In Britain, a discretionary power to charge consumers for certain non-residential social services was introduced in the 1983 Health and Social Services and Social Security Adjudication Act, and the development of charging policies has proceeded rapidly as demands for community care services have grown and constraints on local authority spending have increased. This has led to wide variations in the treatment of disabled people with similar incomes and assistance needs, depending on the area in which they live (Baldwin and Lunt, 1996; Audit Commission, 2000). It is also not clear whether local authorities have a legal responsibility to fund the personal assistance costs of a person wishing to remain in their own home where these exceed the cost of residential accommodation. What has been clarified by court decisions (R v Gloucestershire County Council ex parte Mahfood, Barry, Grinham and Dartnell, R v London Borough of Islington ex parte McMillan) is that local authorities are permitted to have regard to overall resources when making decisions about provision under the 1970 Chronically Sick and Disabled Persons Act (National Consumer Council, 1995). These financial pressures have significant implications for the level of autonomy available to disabled people in Britain.

Tax/benefit provision for personal assistance In Germany, a tax allowance of up to DM 18,000 per year is available to individuals who employ personal or domestic assistants because of disability (Bahle, 1998), but the main source of funding for personal assistance is care insurance, introduced in 1995. This provides three possible levels of benefit, depending on the extent of assistance needs, and provides not only cash benefit, but payment for services, the cost of adaptations and equipment in the home, and the social insurance contributions of a carer. Benefits are not means tested and are available regardless of income and assets; they are not taxable (Bahle and Rothenbacher, 1996). The stated purpose of the care insurance scheme is to help those in need of personal assistance to lead as independent and self-determined a life as possible. The broad aim of the policy, however, is to prioritise the provision of care by relatives and neighbours, leading to reduced social welfare expenditure overall. The law also extends the availability of benefits for personal assistance, which had

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previously been limited to those who were assessed as severely disabled (Ditch et al, 1996). The introduction of care insurance in Germany is seen as having restricted the autonomy of disabled people (www.independentliving.org/ ENIL, July 2000). This is for several reasons. First, the amount of payment made is insufficient to meet all the costs of personal assistance in 7 out of 10 cases. This means that an application has to be made to social services. Second, existing personal assistance cooperatives set up by disabled people have been also forced to operate within the more restrictive definitions of assistance needs set out in the legislation or risk bankruptcy, thus subverting their original aims. Finally, where assistance is provided by a family member, the care insurance payment is made directly to that person, rather than to the disabled person, reducing the amount of control they are able to exercise over how assistance is provided.

The living standards of disabled people Measuring incomes Comparisons of income need to take account of varying household size, to adjust for the fact that the same income has a different value according to the number of people who are dependent on it. A number of equivalence scales have been developed in order to do this. For the purposes of this analysis, the OECD scale (which counts the first adult as 1.00, additional adults as 0.7, and children as 0.5) has been used. This scale tends to produce rather large estimates of poverty in households with dependent children, but these are not a majority among disabled people, because of the age structure of this population. However, it also has a tendency to produce low estimates of one-person households in poverty (Mitchell, 1991), and this should be borne in mind when interpreting the results. The comparisons which are made are of aggregate income, and have very limited comparability across countries. Their main purpose is to establish the relative position of disabled and non-disabled people within each country. Different levels of information were available in the three surveys. The data supplied for the Level of Living Survey does not provide a breakdown of the different components of income; the income data supplied is total gross income net of transfers. The German SocioEconomic Panel (GSOEP) contains a large variety of income variables but no composite income variable. Several composite income variables

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Table 24: Equivalent income quartiles by disability (%)

Disabled (Britain) Non-disabled (Britain)

Lowest quartile 37.7** 23.2

Second quartile 22.6 24.3

Third quartile 20.1 25.6

Highest quartile 19.6** 26.9

Disabled (Sweden) Non-disabled (Sweden)

21.4 25.5

26.5 24.8

28.4 24.4

23.6 25.2

Disabled (Germany) Non-disabled (Germany) ** significant at the 99% level.

22.7 25.1

24.0 25.1

27.4 24.8

25.9 25.0

Source: Level of Living Survey, 1991; BHPS, 1991; GSOEP, 1991; original analysis

have, however, been produced by the team at Syracuse University for their comparative work using the GSOEP and the American Panel Study of Income Dynamics; the variables for total household pre-tax and post-tax and transfer incomes have been used for the analysis. The analysis of the British Household Panel Survey (BHPS) also uses a computed variable providing total gross annual household income1. Income from particular sources has also been compared for the GSOEP and the BHPS; unfortunately it was not possible to do this for the Level of Living Survey, due to data limitations.

The relationship between disability and poverty Defining poverty is both complex and contentious. A relative definition of poverty is of obvious relevance when seeking to explore differences in the living standards which are the result of life events. The definition of poverty adopted by the European Commission, and widely recognised as an international standard, states that: The poor shall be taken to mean persons, families and groups of persons where resources (material, cultural and social) are so limited as to exclude them from the minimum acceptable way of life in the Member States where they live. (European Council Declaration of 19 December 1984, EC Third Poverty Programme, cited in Room, 1995)

Income quartiles are one way of representing income distribution, and Table 24 shows the likelihood of households containing a disabled adult in each country being in lower income quartiles than non-disabled people. Disabled people in Britain are over-represented in the lowest income quartile, and under-represented in the highest; by contrast in

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Table 25: Individuals living in households with below 50% median equivalent income Country

Disabled

Non-disabled

Sweden – post transfer Germany pre-transfer Germany – post transfer

16.0 30.0** 7.5

20.2 14.9** 8.5

Great Britain – post transfer

26.3**

14.4**

** significant at the 99% level.

Source: Level of Living Survey, 1991; GSOEP, 1991; BHPS, 1991; original analysis

both Sweden and Germany, the household income distribution is similar for disabled and non-disabled people, and disabled people in Sweden are slightly less likely than non-disabled people to be in the lowest income quartile. Households in poverty are conventionally defined as having less than 50% of the mean or median equivalent household income in their country. Table 25 shows the proportion of disabled people living in households with less than 50% median equivalent income in each of the three countries. Britain has by far the highest poverty rates for disabled people; over a quarter are poor after payment of taxes and benefits. In Germany, by contrast, although disabled people are twice as likely to be poor pre-transfer, post-transfer poverty rates are slightly lower than for non-disabled people. Perhaps surprisingly, disabled people in Sweden are less likely to be living in a household with less than 50% of mean equivalent income than the general population. The overall rates of poverty obtained for Sweden also appear high compared with some other published estimates. Halleröd (1995) compared estimates of poverty using income registered for tax purposes and interview data; around 5% of households were poor on both measures, while only 2% were poor based on registered income alone, and 8% on interview data alone. Atkinson (1985) found 7.6% of people in Sweden to be living in households with less than 50% of median income, but this figure was artificially high as it counted young people living with their parents as separate households with very low levels of income. Comparing the results with contemporaneous Luxembourg Income Study (LIS) estimates of poverty, however, shows that the figures for Sweden and Britain are broadly what one would expect; although those for Germany are lower than anticipated, this is probably due to the exclusion of older people from the sample. Table 26 shows pre- and post-transfer rates of poverty by household type. Overall, household poverty rates pre-transfer are highest in Sweden,

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Table 26: Households below 50% mean income before and after social security benefits and direct taxation, circa 1990 (%) Household type Older single

Sweden before/after 95.9 9.6

Germany before/after 74.8 21.7

Britain before/after 83.9 46.5

Older couple Single no children Couple no children

81.1 37.9 10.6

0.7 18.3 2.0

68.8 22.1 13.2

12.9 21.7 16.3

68.2 36.2 13.2

30.4 23.5 8.9

Lone parent Couple with children Other

32.0 10.4 0

2.6 2.9 0

40.3 11.6 32.9

34.2 12.1 16.9

78.6 19.9 35.8

51.8 17.5 17.8

Total

41.4

9.1

32.7

17.5

38.1

23.0

Source: Ditch et al (1996, tables 4.2 and 4.3), based on data from LIS

Table 27: Numbers of earners in household and poverty rates, by disability status (Britain and Sweden) Britain

Sweden

% with number of earners (% in poverty) None One

Disabled 25.6 (80.4) 32.2 (35.9)

Non-disabled 9.4 (67.7) 29.4 (35.5)

Disabled 23.0 (28.5) 38.5 (16.6)

Non-disabled 12.6 (59.6) 34.8 (24.6)

Two or more

42.2 (6.0)

61.2 (5.8)

38.5 (7.9)

52.6 (7.8)

Source: BHPS, 1991; Level of Living Survey, 1991; original analysis

and lowest in Germany. After transfers Sweden has much the lowest household poverty rate, at under 10% while Britain, with nearly a quarter of households still in poverty, has the highest.

The importance of labour earnings Labour market earnings are the main source of income for the majority of households; the number of earners in a household is a key determinant of living standards. The over-representation of disabled people among poor and low-income households in Britain would appear to be readily accounted for by the fact that a quarter live in households where no one is in work, while almost a further third have only one earner in the household, as can be seen in Table 27. By contrast, over 60% of nondisabled people live in a household with two or more earners. Disabled people are also more likely to be poor than other people in no-earner households. Over four fifths of disabled people living in households with no earners are poor, compared with under two thirds of non-

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Table 28: Benefits as a proportion of total household income (Germany and Britain) Germany

Less than 30% income 30% or more income 50% or more income 100% income

Britain

Disabled (n = 613)

Non-disabled (n =7,077)

Disabled (n=731)

Non-disabled (n=7,070)

43.1** 56.9** 4.2**

61.0** 39.0** 2.3**

65.3** 39.0** –

89.3** 10.7** –

–

–

12.6**

3.1**

** significant at the 99% level

Source: GSOEP, 1991; BHPS, 1991; original analysis

disabled people. Over a third of disabled and non-disabled people living in one-earner households are poor. However, although disabled people in Sweden are also over-represented among no-earner households, and under-represented in households with two or more earners, this does not result in poverty; disabled people in no-earner households are much less likely than non-disabled people in such households to be poor, probably because of the more generous benefits which are available. It was not possible to carry out a comparable analysis for Germany, owing to data limitations.

Benefits and their contribution to household income We have seen that benefits may have a significant effect in reducing poverty in no-earner households. They may also be an important source of income for other households. As can be seen from Table 28, disabled people in Germany are more likely than non-disabled people to rely on social security transfers as a major income source; benefits account for 30% or more of household income in over half of households containing a disabled adult, as against fewer than 40% of households in which no one is disabled. However, benefits are in most cases a supplement to other forms of income in the household; only a very small minority of households receive over 50% of their income from transfers. In Britain, fewer households rely on transfers as a major income source, but far more households are completely dependent on benefits. Although only around a third of disabled people are in households where benefits make up 30% or more of household income, this is over three times the rate for non-disabled people, and a substantial minority (around one in eight) live in households where cash transfers are the sole source of income. The corresponding proportion for non-disabled people is just over 3%.

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Working for a living?

The effects of poverty and low income Disabled people in Britain are more likely than non-disabled people to be in lower income groups, and particularly if they are not working, whereas in Germany and Sweden, disabled people are less likely than other groups to live in poor households. This makes it possible to explore some of the non-monetary effects of disability, not only in terms of looking at non-income measures of deprivation and the effects on social participation, but in attempting to disentangle the effects of discrimination from the disabling effects of lack of money. The analysis presented below concentrates on the financial and material effects of low income and poverty.

Non-monetary indicators of living standards The concept of ‘relative deprivation’, first introduced by Townsend in the late 1970s (Townsend, 1979), sought to conceptualise the experience of poverty in the industrialised world, where being poor does not imply starvation, but results in the inability to conform with accepted social norms, both in terms of purchasing items such as clothing and household goods which are commonly regarded as necessities, and of engaging in the normal social customs of a given country (see for instance, Mack and Lansley, 1984). It is this second aspect of poverty which is emphasised by the now widely used term ‘social exclusion’. As Atkinson (1985) has argued, conceptualising poverty in this way enables us to focus on the exercise of citizenship rights: On the standards of living approach, we are concerned that people attain a specified level of consumption, as represented in the US poverty line by its reference to ‘consumption requirements’ and its origins in the Department of Agriculture economy food plan. On the rights approach, people are entitled, as citizens, to a minimum income, the disposal of which is a matter for them. The reference to citizenship is deliberate. Entitlement to a minimum is seen both as a reward for citizenship and as a pre-requisite for participation in society. (Atkinson, 1985, p 4)

Although there has been considerable debate about the value of the concept of relative deprivation, both from those on the political Right who have argued that it cannot be regarded as a proxy for poverty (see for instance, Joseph and Sumption, 1979; Moore, 1989) and by those

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Table 29: Perception of current financial situation by poverty and disability (Britain) (%) ‘Poor’ disabled (n = 191)

‘Poor’ non-disabled (n =1,013)

18.3 24.1 42.9

14.0 20.1 37.8

9.1** 13.5** 36.1**

3.0** 6.9** 27.6**

7.9 6.8

19.2 8.8

20.0** 21.3**

33.1** 29.4**

Very difficult to manage Quite difficult to manage Just about getting by Doing alright Living comfortably ** significant at the 99% level

Non-poor disabled (n=540)

Non-poor non-disabled (n=6,040)

Source: BHPS, 1991; original analysis

concerned with issues of absolute poverty in the developing world (Sen, 1983, 1988), there is in fact a high degree of popular consensus about the items which should be regarded as necessities, and the activities which are perceived as ‘normal’, as has been demonstrated by the ‘Breadline Britain’ surveys carried out in Britain since the 1980s (see, for instance, Mack and Lansley, 1984, 1992). Moreover, although critics have highlighted the problem of distinguishing enforced lack of an item from the choice not to have it, numerous studies have demonstrated the correlation between a certain income threshold and a fall in the overall material and social capital of households (see, for instance Townsend, 1979; Mack and Lansley, 1984; Bradshaw and Holmes, 1989), proving the robustness of this form of measurement. When considering disability and deprivation, however, it is particularly important to identify items or activities which are precluded for reasons unconnected with income, for instance being unable to go to the cinema because of problems of access. In the analysis which follows, some indicators are available for all three countries, but different measures are also used for each of the three countries, reflecting the data available in the surveys used.

Evidence of financial stress There are a number of ways of measuring financial stress; these range from indicators such as being late in paying household bills to more subjective assessments of the financial situation provided by respondents. Table 29 presents British respondents’ subjective assessments of their financial situation. There are no statistically significant differences between disabled and non-disabled people living in poor households, although disabled people are slightly more likely to say that they are finding it ‘difficult’ or ‘very difficult’ to manage. Among those in non-

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Table 30: Whether able to save from current income and financial expectations for year ahead (Britain) (%)

Able to save Next year will be better Next year will be worse Next year will be about the same

All disabled 31.2

All non-disabled 45.2

25.0 19.0 56.0

36.2 12.7 51.1

‘Poor’ ‘Poor’ disabled non-disabled 12.0 33.3 16.2 26.0 57.8

35.5 13.5 51.0

Source: BHPS, 1991; original analysis

poor households, disabled people are three times as likely as non-disabled people to report difficulty in managing, suggesting that extra costs are reducing living standards. Table 30 looks at whether people in Britain are able to save from their current income and their financial expectations for the year ahead. Disabled people were likely to report that they were unable to save from their present income; fewer than a third were saving as compared to 45% of non-disabled people. This could have been simply a function of the lower incomes of the disabled group. When income was controlled for, however, the differences between the two groups not only persisted but increased; in the lowest income quartile, over 85% of disabled people were unable to save, compared to just under two thirds of non-disabled people. This again suggests that disabled people are incurring additional costs which reduce the level of flexibility within a given income level. Disabled people are also less optimistic than non-disabled people about their financial prospects for the year ahead. Only a quarter of disabled people expect their financial situation to improve, compared with over a third of non-disabled people. Non-disabled people living in poor households are more than twice as likely as disabled people in the same situation to expect their standard of living to improve during the coming year. Table 31 presents Swedish respondents’ assessment of their financial situations in the preceding year. Disabled people are more likely than non-disabled people to have money problems. Around 13% of nondisabled people described themselves as having had financial problems during the previous year, compared to almost 20% of disabled people; over a third of disabled people living in poor households reported money problems, compared to one in five non-disabled people in poor households. The survey also includes a question about whether the respondent could raise 10,000 Kr (about £1,000) in an emergency; almost 90% of non-disabled people said that they would be able to do

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Table 31: Financial situation of disabled and non-disabled people in Sweden (%) Disabled (n = 603) 18.3

Very difficult to manage

‘Poor’ disabled 14.0

Money problems in last year 19.6* 35.4* Able to raise Kr 10,000 79.8** 69.0 Had holiday in previous year 65.5** 57.0** * significant at the 95% level; ** significant at the 99% level

Non-disabled (n=3,825) 9.1**

‘Poor ’ non-disabled 3.0**

12.7* 89.6** 75.7**

20.4** 78.9** 69.2

Source: Level of Living Survey, 1991; original analysis

Table 32: Use of car or van and telephone by disability and poverty (%) ‘Poor’ Use of car or van Disabled Non-disabled Use of telephone Disabled Non-disabled

Britain ‘Non-poor’

‘Poor’

Germany ‘Non-poor’

71.6 79.1

91.8 92.0

90.0 83.6

92.4 92.4

65.3 68.9

92.5 93.6

84.8 88.5

97.0 96.6

Source: GSOEP, 1991; BHPS, 1991; original analysis

this, compared to only 80% of disabled people, and fewer than 70% of poor disabled people. Three quarters of non-disabled people in Sweden had a holiday in 1990, compared to two thirds of disabled people. About two thirds of non-poor disabled people and poor non-disabled people took a holiday in 1990, compared to only 57% of disabled people in poor households. This may be an indication of financial hardship, but could equally reflect problems of access; disabled people may also not have had a holiday because of poor health or lack of suitable facilities. Table 32 shows the level of access to private transport2 and telephones for disabled and non-disabled people in Germany and Britain. It can be seen that disabled people in Britain have similar levels of access to private transport to non-disabled people, with over nine out of ten households having the use of a car, but that this falls to only seven out of ten in poor households containing a disabled adult. In Germany, the overall level of access to private transport is similar, but disabled people who are poor are slightly more likely than other poor households to have the use of a car. German households have higher levels of access to a telephone at home than those in Britain. Around 85% of poor households and 97% of non-poor households have a telephone. By

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Table 33: Current satisfaction with life (Sweden) (%) Disabled (n = 626) 28.7**

‘Poor’ disabled (n =97) 33.0

Non-disabled (n=4,021) 43.5**

‘Poor’ non-disabled (n=515) 43.0

Rather good Neither good nor bad Rather bad

58.6** 6.3** 4.7**

44.3 11.3 9.3

51.3** 3.4** 1.3**

47.7* 6.0* 2.9*

Very bad Deteriorated over last 10 years Improved over last 10 years

1.6** 24.0** 39.9**

2.1 25.8 35.1

0.3 ** 11.3** 53.6**

0.5 11.7* 46.2*

35.1

42.1*

Very good

Little change over last 10 years 36.1 39.2 * significant at the 95% level; ** significant at the 99% level. Source: Level of Living Survey, 1991; original analysis

contrast, only about two thirds of poor households in Britain have a telephone, and disabled people in poor households are least likely to have access to a telephone.

Satisfaction with life The Swedish Level of Living Survey adopts a broad approach to the issue of living standards including questions on noise, access to green spaces, interaction with neighbours and so on, in addition to seeking information about housing, income and working conditions. Thus, the questions which ask respondents about their satisfaction with life at present and compared to the previous 10 years cover much more than simply financial issues. In addition, it is not possible to identify the point at which a respondent became disabled, so that satisfaction levels are as likely to reflect individual life events (ie becoming disabled) as changes in the quality of life for disabled people more widely. Whatever the reasons, there are significant differences in the satisfaction levels reported by disabled and non-disabled respondents (Table 33). Similar proportions of disabled and non-disabled people report that life is ‘rather good’, but fewer than 30% of disabled people describe life as ‘very good’, compared with over 40% of the non-disabled population. At the other end of the scale, 6.2% of disabled people describe life as ‘rather bad’ or ’very bad’, compared to only 1.6% of non-disabled people. When asked to compare their current situation with that 10 years previously, just over a third of both disabled and non-disabled people reported that there had been little change, whereas disabled people were more than twice as likely as non-disabled people to say that their living conditions

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Table 34: Satisfaction with various areas of life (Germany) Mean scores (0-10 most satisfied) Household income

Disabled (n= 652) 6.3**

Non-disabled (n= 7,128) 6.8**

Standard of living Leisure Accommodation

6.5** 7.0** 7.6**

7.2** 6.5** 7.3**

Neighbourhood ** significant at the 99% level

7.6**

7.5**

Source: GSOEP, 1991; original analysis

Table 35: Overall satisfaction with life (Germany)

Satisfaction with life at present

All disabled (n=638) 6.6**

All non-disabled (n=6,993) 7.5**

6.5**

7.4**

Expected satisfaction with life in 5 years’ time ** significant at the 99% level

‘Poor’ ‘Poor’ disabled non-disabled (n=48) (n=653) 5.9** 7.4** 5.3**

7.2**

Source: GSOEP, 1991; original analysis

had deteriorated over the past 10 years. Over half of non-disabled people reported an improvement in their quality of life, compared with only 39% of disabled people. The GSOEP has few non-monetary indicators of poverty; in the absence of hard data, satisfaction scores on various items have been compared. These can, of course, provide only broad indications, since measuring satisfaction in itself reveals nothing about material living standards. As can be seen from Table 34, disabled and non-disabled people in Germany have similar levels of satisfaction with respect to their leisure time, accommodation and neighbourhood, but disabled people have lower levels of satisfaction where their household income and standard of living are concerned, although, as we have noted, their incomes and living standards appear broadly comparable to those of their non-disabled peers. Again, this may reflect the pressures of additional costs. Disabled people in Germany also had lower overall satisfaction scores than non-disabled people, as Table 35 demonstrates, although neither group appeared to expect either an improvement or a significant deterioration in the quality of life in the near future. Levels of satisfaction with life may obviously be affected by a number of factors, including health status, income and employment. Comparison of the satisfaction levels of disabled and non-disabled people living in households below

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50% of median household income shows that disability appears to have a greater influence than income level, since there was less difference between poor and non-poor groups than between disabled and nondisabled.

Income, disability and social participation The extent to which disabled people participate in the social and political lives of their societies is one measure of their integration. Although, as Doyal and Gough (1991) remind us, critical autonomy may imply a rejection of conventional forms of activity, it is first necessary to be able to participate on equal terms. Numerous factors, including age, educational level, social class, sex and income, influence the extent of a person’s social and political participation. For disabled people, the barriers created by physical access and societal attitudes are additional factors. Paid work can affect social participation positively, by increasing income, and creating a wider network of social contacts, or negatively, by consuming so much of the person’s time and energy that such activities are precluded. A key concern was to see whether disability exerted an effect independently of other factors which often accompany it (such as unemployment and low income) and also to examine the role of paid work in influencing patterns of social and political participation. The indicators used to measure social participation were rather limited and varied from country to country. The following section looks at social and political participation and at perceived well-being among disabled and non-disabled people, and explores the extent to which these are positively or negatively influenced by disability, employment and income level.

Disability and household structure One determinant of social support and social activity is household structure; those who live alone are likely to have a reduced number of social contacts. Table 36 shows the proportion of people living in households of various sizes in the three countries. It can be seen that one-person households are much more common in Sweden than in Germany or Britain. Disabled people in Sweden and Germany are more likely than non-disabled people to live alone or with one other person, and less likely to live in a household of three or more persons. This is primarily a life-cycle effect, as disabled people are older than the population as a whole, and therefore less likely to be

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Table 36: Household size by disability status (%) Household size Non-disabled Sweden (n=3,996)

1 17.7**

2 31.1**

3 19.5

4 or more 31.8**

Disabled Sweden (n=615) Non-disabled UK (n=7,074) Disabled UK (n=733)

23.2** 6.9 10.6

39.6** 28.7 31.7

17.1 23.3 21.1

20.1** 41 36.7

Non-disabled Germany (n=7,151) Disabled Germany (n=656) ** significant at the 99% level

7.7 10.4

23.0** 41.3**

26.6 24.5

42.7** 23.7**

Source: BHPS, 1991; GSOEP, 1991; Level of Living Survey, 1991; original analysis

living with dependent children. Once age is controlled for, the differences cease to be statistically significant. In Britain there are no statistically significant differences either within or across age groups.

Social support The concept of social support includes not only practical help but also companionship and feeling valued in close relationships. Disabled people who are socially isolated may be deprived of these types of support, or may be reliant on family members to meet their needs. Research into people experiencing unemployment and poverty (Paugam, 1996) has found that they tend to have reduced social contacts and fewer support resources to draw on than the rest of the population, and similar issues may arise for disabled people. The Level of Living Survey asks respondents about their support networks – whether they have someone they feel able to talk to when they feel ill, in need of support, or wanting company, and about a range of social activities undertaken. As Table 37 shows, disabled people in Sweden are slightly more likely than nondisabled people to lack support when they are ill or need company or someone to confide in. Using different definitions of disability, it can be seen that those in the functionally impaired group are least likely to have someone to talk to, and most likely to have an overall ‘support score’ of zero or one. There is a very small minority of disabled people who have little or no support to rely on, as is indicated by the last row of the table. Unfortunately, as the numbers involved are so small (under 25) they are not amenable to further statistical analysis. The BHPS asks a similar series of questions about social support, with five items. Although disabled people had slightly lower reported levels of social support than non-disabled people, no statistically significant differences were found on any individual measure of support.

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Table 37: Social support by disability status (Sweden) (%)

% of respondents who have Support when they want company

Not Disabled/ Functionally Any severe disabled ill impaired condition (n=4,290) (n=626) (n=356) (n=373) 97.7 95.2 94.6 94.6

Support when they want to talk Support when ill Support ‘score’ 1 or less ** significant at the 99% level

96.6** 97.7 1.9**

92.6** 95.2 5.4**

90.2** 94.3 6.2**

93.5** 95.7 5.9**

Source: Level of Living Survey, 1991; original analysis

Table 38: Social support scores by disability, poverty, gender and employment status (Britain) Mean support score (max 5) All

Disabled 4.5**

Non-disabled 4.7**

Men Women Working

4.4 4.5 4.6**

4.6 4.7 4.7

Not working Poor ** significant at the 99% level

4.4** 4.0**

4.6 4.6**

Source: BHPS, 1991; original analysis

The five individual measures were converted into a score and this was compared for disabled and non-disabled people in different situations. As Table 38 shows, disabled people in each situation have lower support scores than non-disabled people. Disabled people who are poor have the lowest scores, while non-disabled people who are working have the highest scores. Men, whether disabled or not, also have slightly lower levels of social support than women. Table 39 shows who provides support for disabled and non-disabled people in Germany when they are ill. Disabled people are more likely to receive help from a partner, and less likely to be helped by another close relative.

Social and community activity Disabled people often face physical and attitudinal barriers to participation in social and community activities. Participation may also be affected by income level (if the activity requires financial resources which the respondent does not possess) and by employment status (which

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Table 39: Who helps when respondent is ill (Germany) % Partner Parent, child or sibling Other relative Friends and neighbours Other ** significant at the 99% level

Disabled 76.1**

Non-disabled 67.4**

18.0** 1.7** 3.5

28.2** 0.8** 3.3

0.7

0.4

Source: GSOEP, 1991; original analysis

Table 40: Community activity in Britain % who are members of ... Any organisation

Disabled 56.1

Non-disabled 60.7

More than one organisation Tenants’ association Social club

21.3 4.5 16.2

25.6 7.1 12.5

4.5 5.6

3.0 2.8

Voluntary organisation Community organisation Source: BHPS, 1991; original analysis

may mean that the respondent has less time available for such activities). There is rather limited information available on such activities in the three surveys. As can be seen in Table 40, over half the population of Britain is a member of at least one organisation, but only around a quarter is a member of more than one organisation. Disabled people have very similar levels of participation to the population as a whole. However, disabled people are slightly more likely than non-disabled people to be members of a social club, community or voluntary organisation. This raises the question of whether any or all of these activities are functioning as a substitute for some aspects of paid work. Table 41 looks at the membership and activity rates for disabled people according to their employment status. Disabled people who are working are more likely to be members of social and community groups, which may reflect the costs of membership, but disabled people who are not working are almost twice as likely to be a member of a voluntary organisation and to be active in the organisation, and are also more likely to be active in social groups in which they are a member, possibly reflecting the additional time they have available for such activities. There is no comparable data in the GSOEP; Table 42 shows the extent to which respondents feel part of their local community. Most

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Table 41: Community activity of disabled people by employment status (Britain) Working disabled people 18.6

Non-working disabled people 14.3

Active in social club Members of voluntary organisation Active in voluntary organisation

8.0 3.4 2.3

11.6 6.3 6.3

Members of community group Active in community group

7.0 5.8

4.5 2.7

% who are... Members of social club

Source: BHPS, 1991; original analysis

Table 42: Extent to which respondents feel part of their local community (Germany) % responding Very strongly

Disabled (n=513) 32.0

Non-disabled (n=5,084) 30.6

53.6 11.9 2.5

48.8 17.4 3.2

Strongly Weakly Not at all Source: GSOEP, 1991; original analysis

people in Germany report a strong sense of belonging to their local community, and there are no significant differences between disabled and non-disabled people in this respect. Analysis by income level and employment status also revealed no significant differences. The Swedish Level of Living Survey contains variables on a wide range of social activities. These were used to create three variables – ‘social 1’ which includes all 18 activities in the survey, ‘social 2’ which covers home-based activities only, and ‘social 3’ which excludes sports and dancing. As Table 43 shows, there were significant differences between disabled and non-disabled people on both of the two general measures. As one would expect, these were less once account had been taken of possible physical barriers to participation by excluding sports and dancing. Looking at the second variable, which concentrates on a narrower range of activities which are home-based, such as being visited by friends and relatives, reading and playing a musical instrument, there are no significant differences between the two groups. There were no significant differences in social activity by employment status, age group or poverty, suggesting that problems of physical access were the main reason for these differences between disabled and non-disabled people.

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Table 43: Social activity scores of disabled and non-disabled people in Sweden Mean scores on social activities

Disabled people

Social 1 (max 18) Social 2 (max 6) Social 3 (max 14) ** significant at the 99% level

Non-disabled people

8.5** 3.8 7.2**

10.3** 4.1 8.4**

Source: Level of Living Survey, 1991; original analysis

Table 44: Political activity and political interest in Sweden

% of respondents who Voted in 1988 election Intended voting in 1991 election

Non-disabled (n= 4,020) 91.0 86.1

Disabled (n=621) 88.6 82.4

Functional impairment (n=366) 88.8 81.9

9.6

12.7

12.8

7.0 15.7 31.8 45.5

8.8 19.7 32.4 39.2

12.0** 21.6** 32.2 34.2**

Are members of a political party Levels of expressed political interest: Don’t even listen when people talk politics Listen but don’t join in Sometimes join in discussion Usually take an active part in discussion ** significant at the 99% level. Source: Level of Living Survey, 1991; original analysis

Political activity and interest in politics Disabled people in Sweden are slightly more likely than non-disabled people to be members of a political party, but the differences are not statistically significant. Disabled people were also very slightly less likely than non-disabled people to have voted in the 1988 elections or to intend voting in the 1991 election, as Table 44 shows. There were no statistically significant differences either for the broadest category of disabled people, or for the more narrowly defined group of ‘functionally impaired’ disabled people. Disabled people in Sweden have a slightly lower level of interest in politics than non-disabled people, and those with a functional impairment have the lowest level of interest, only just over a third describe themselves as usually taking an active part in political discussions, compared with 45% of non-disabled people. Table 45 shows the reported level of interest in politics in Germany. More disabled than non-disabled people reported that their interest in politics was strong, and correspondingly fewer reported a weak level of political interest. Levels of interest in politics in Germany are also affected

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Table 45: Political interest by poverty, disability and employment status (Germany) (%) Very strong 9.5 7.8

Strong 34.0* 26.8*

Weak 38.7* 47.6*

None at all 17.8 17.7

Disabled working (n=297) Disabled not working (n=313) Non-disabled working (n=5,322)

10.4 8.6 8.1

38.4 30.4 28.1

37.0 41.5 48.2

14.1 19.5 15.7

Non-disabled not working (n=1,745) Disabled non-poor (n=564) Disabled poor (n=46)

7.1 10.1 2.2

23.4 34.6 30.4

46.4 39.9 32.6

23.2 15.4 34.8

8.1 5.5

27.8 17.9

47.6 48.7

16.5 28.4

All disabled All non-disabled

Non-disabled non-poor (n=6,468) Non-disabled poor (n=601 ) * significant at 95% level. Source: GSOEP, 1991; original analysis

Table 46: Level of interest in politics (Britain) % responding Very interested Fairly interested

Disabled (n=733) 10.1 37.9

Non-disabled (n=7,074) 8.5 40.0

31.3 20.7

32.6 18.9

Not very interested Not at all interested Source: BHPS, 1991; original analysis

by employment status and by poverty. Disabled people in work express the strongest interest in politics and disabled people who are poor the weakest. Table 46 shows the level of political interest in Britain. Although the general picture is similar to that in Germany the differences between disabled and non-disabled people are less marked. No significant differences were revealed when levels of political interest among disabled people were explored by gender, employment status and income level. The Level of Living Survey also asks respondents a series of questions designed to measure their ‘political resources’, in other words their ability to raise issues which are important to them, by such means as making an official complaint, attending a demonstration, writing to a newspaper or contacting someone in a position of influence. Disabled and nondisabled people are equally likely to have taken part in a demonstration, or to have written to a newspaper, but disabled people are less likely to feel able to make a complaint alone, and more likely to lack someone who can help them make such a complaint, as Table 47 demonstrates.

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Table 47: Political resources by disability status (Sweden) % reporting that they ... Have ever taken part in a demonstration Have written to a newspaper Have contacted someone with influence Are able to make a complaint, alone or with help Cannot complain alone, and have no one to help * significant at the 95% level.

Disabled (n=624) 24.2 21.1

Non-disabled (n=4,020) 25.2 20.2

21.3 90.6* 9.4*

17.4 94.8* 5.2*

Source: Level of Living Survey, 1991; original analysis

Table 48: Political resources by employment, poverty and disability status Disabled people

Average scores for group (0-4 scale) 1.3

Non-disabled people Working Non-working

1.3 1.4** 1.2**

Poor Non-poor ** significant at the 99% level

1.2** 1.3**

Source: Level of Living Survey, 1991; original analysis

On the other hand, disabled people are more likely ever to have contacted a person in a position of influence; 21.1% claimed to have done this, compared to 17.4% of non-disabled people. The political resources variables were combined to create a score, which was then used to explore differences between groups; there were statistically significant, but very small, differences between those who were working and those who were not, and between the poor and non-poor (with some obvious overlap between these two groups) but no differences between disabled and non-disabled people, as can be seen in Table 48. Income, rather than disability or employment status, appears to be the most influential factor.

Well-being and personal resources Disabled people are likely to have lower levels of reported well-being than non-disabled people, because of their experiences of discrimination and exclusion from various aspects of social life, in addition to any health problems which may result from their impairment. This next

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Table 49: Extent to which respondents feel in control of their own lives (Sweden) % reporting Usually Sometimes Not at all ** significant at the 99% level

Disabled (n=598) 67.1**

Functionally impaired (n=350) 62.9**

Non-disabled (n=3,999) 73.0**

21.9 11.0**

22.5 14.5**

22.0 5.0**

Source: Level of Living Survey, 1991; original analysis

Table 50: Psychological well-being (Sweden) Disabled (n=349)

‘Poor’ disabled (n=90)

Non-disabled (n=4,238)

% reporting Generally satisfied with daily life Usually 45.0** 45.6 Sometimes 39.5** 38.9 Not at all 15.5** 15.6 Able to resolve problems Usually 38.5 39.6 Sometimes 50.9 46.2 Not at all 10.6 14.3 Find it hard to understand things which happen in their lives Usually 6.2** 6.7 Sometimes 30.3 29.2 Not at all 63.5 64.0 ** significant at the 99% level

‘Poor’ non-disabled (n=792)

59.2** 34.5** 6.4**

54.2 37.0 8.8

36.0 56.8 7.3

33.5 59.0 7.4

2.0** 27.4 70.7

2.8 31.1 66.1

Source: Level of Living Survey, 1991; original analysis

section of analysis compares indicators of well-being and examines the extent to which disabled people feel autonomous and valued in their daily lives. Disabled people in Sweden are less likely than non-disabled people to report that they usually feel in control of their own lives, as is shown in Table 49. Almost 15% of those with a functional impairment and 11% of disabled people as a whole say that they do not feel in control of their lives at all, compared to only 5% of non-disabled people. As Table 50 shows, disabled people in Sweden are significantly more likely than non-disabled people to be dissatisfied with their daily lives, and disabled people who are poor have the same satisfaction levels as those who are not, suggesting that it is the experience of disability itself, rather than its economic consequences, which is reducing satisfaction levels. Disabled people are also more likely than non-disabled people to report that they feel unable to cope with problems, but especially if they are poor, suggesting that both disability and income have an effect

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Table 51: Extent to which respondents feel that they are playing a useful role (Britain) % reporting More than usual Same as usual Less than usual Much less than usual ** significant at the 99% level

All disabled 10.9 58.3** 20.3** 10.4**

All non-disabled 13.9 75.3** 8.6** 2.2**

Working disabled 9.5

Working non-disabled 15.0

70.2 15.5 4.8

76.4 7.3 1.3

Source: BHPS, 1991; original analysis

on perceived coping ability. Table 50 shows the extent to which respondents feel unable to understand what is happening in their lives, an indicator of psychological distress. Only 6% of disabled people report that they usually feel this way, but it is three times the rate for nondisabled people. Work has an important influence on whether people feel that they are playing a useful role in life, as Table 51 demonstrates. Disabled people in Britain are much less likely than non-disabled people to say that they feel they are playing a useful role, but once employment status is controlled for, the differences are reduced and cease to be statistically significant. It is sometimes suggested that employment has less effect on the well-being and self-image of women, because they have an alternative identity available in the domestic sphere (Verbrugge, 1987). However, the analysis revealed no differences between men and women, whether disabled or not, in the extent to which work affected their sense of having a role to play. This variable is one of 12 in the BHPS which measure psychological well-being, including whether the person is losing confidence, how capable they feel of making decisions and so on. These represent a recognised scale measuring overall well-being; the higher the score, the worse the respondent’s overall level of well-being. The results are presented in Table 52. It can be seen that disabled people in Britain have significantly worse levels of well-being than non-disabled people, although the picture is different if gender, employment status and income are taken into account. Disabled men who are working have levels of well-being comparable to non-disabled people in work, but disabled women have the lowest levels of well-being whether or not they are in work. The reasons for this may include differences in women’s experiences of disability, women’s generally lower rewards from working, and the fact that many women

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Table 52: Overall well-being by disability, gender, poverty and employment status (Britain) Disabled

Not disabled

All Men Women

3.6** 3.0 4.0

1.6** 1.9 1.6

Working Not working Poor

3.1†** 4.0** 2.3

1.5** 2.3** 2.3

Not poor

1.6

1.6

† Men 2.0, women 4.0 ** significant at the 99% level

Source: BHPS, 1991; original analysis

Table 53: Summary of disabled people’s social participation relative to non-disabled people Indicator Living alone

Sweden higher

Germany similar

Britain similar

Levels of social support Level of interest in politics TU membership

slightly lower lower higher

— higher —

slightly lower slightly higher similar

Well-being/social coping Organisation membership

lower similar

— —

lower similar

have the major responsibility for domestic roles as well as being in employment. Kaufman’s (1986) study of people with arthritis also found that women had low levels of well-being, because of an inability to opt out of their social role obligations, even when these became burdensome. Table 53 presents a summary of the social participation indicators for all three countries. Disabled people in general do not appear to have radically different patterns of social participation from non-disabled people, although it can be seen that they generally have reduced levels of social support, and report lower levels of well-being. The limited amount of data available on social and political participation in the three surveys (particularly for Germany) makes it difficult to draw firm conclusions about to what extent disabled people are excluded from the normal lives of their communities. However, it is clear from the analysis presented in this chapter that disability, poverty and employment status all have some effect on levels of political interest and social activity, and that these effects are intensified where all three coexist. Disabled people who are out of the labour market and in low

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income groups are particularly likely to experience social exclusion. This, in turn, has negative effects for the perceived well-being of those affected, although it should be noted that these are in any case generally lower for disabled people. On the other hand, disabled people who have employment and a reasonable level of income have similar levels of interest in politics and social activities to non-disabled people, suggesting that much of the disadvantage experienced by disabled people is not intrinsic to their impairment and can be ameliorated by employment and income policies. Notes 1

In other words, after social security benefits, but before payment of tax.

2

Excluding those who indicated that this was not applicable, because they did not drive and had no one else to drive them, or were unable to travel by car or van.

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FIVE

Conclusion and policy implications

Introduction We began this exploration of the relationship between disability, independence and citizenship by speculating on the possible links between employment, living standards and the social and political participation of disabled people of working age. We also sought to discover whether the disability policies adopted by different welfare state regimes were consistent with usual classifications of their welfare provision, and to what extent the different policies adopted in the three countries compared do in fact result in significantly different outcomes for disabled people. This final chapter reviews the evidence.

Comparing outcomes at different stages of the life cycle Thinking about the effects of policy in each of the three countries as a whole, these will differ depending on the age of the disabled person, the age at which they became disabled, the extent of their impairment, their gender, and their household situation. Three very typical examples were compared to assess the outcomes of policy in each country. These will now be considered in turn.

Severe disability from birth The first case considered was that of a young disabled person who has had an impairment since birth and has never had paid employment. He or she has a high level of personal care needs, and is currently living with parents. Statistically, this is very much a minority case. Yet it is an important one, for disabled people in this situation often lose out in the education system, with effects which may influence the whole of their subsequent employment history. The fact that most benefit systems are geared to the needs of workers who have made social insurance contributions also means that this group is particularly susceptible to

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poverty. However, this situation is more gender-neutral in its effects than where a disability occurs later in working life. In Britain, benefits for a young disabled person who has never worked are lower than for those who have worked. Although a non-meanstested benefit does exist, this is below the level of social assistance, so this person would also receive social assistance. Non-means-tested benefits are available in respect of personal care and transport needs; these continue to be payable if employment is found. While living at home this person’s parents would be assumed to be the main providers of care, but there are no explicit legal expectations for support, whether financial or practical, to be provided. Depending on age and earnings, one parent may be eligible for a carer’s benefit, but this is insufficient to be regarded as a wage replacement. The prospects of obtaining paid work are poor, unless the disabled person has a university education. Efforts are made to place young disabled people in training schemes, but these rarely lead to employment in the open labour market. The chances of obtaining work decline rapidly after the age of 25. If this person was to move into independent accommodation, they would be eligible to receive housing benefit, and an increased level of social assistance. She or he would also be entitled to receive personal assistance from the local authority, for which charges would be levied according to income and local policy. Direct payments, which enable the disabled person to employ personal assistance on a private basis, are available in an increasing number of areas. In Germany, this person would also receive benefits at a lower level than someone who has had previous employment. However, they would be regarded as part of their parent’s household, rather than as an independent claimant, so social assistance could not be claimed. Parents have clear legal obligations to provide financial support, and they could continue to receive child benefit and tax allowances as long as this person lived at home, regardless of age, because of their disability. The family would be assumed to be the main provider of care. Benefits are available to the disabled person for personal care at home, but would normally be paid direct to the parents where they were providing care. Additional services may be available on a discretionary basis from church and other voluntary sector organisations. Means-tested assistance with transport costs is also available. If he or she left the parental home, they would become entitled to social assistance and housing benefit, and would continue to receive benefits for personal care, which may be used to purchase care from a relative, non-relative or commercial provider. There are also a number of personal assistance schemes which make it

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Conclusion and policy implications

possible to employ an assistant on an individual basis. The availability of commercial services is low, however, and voluntary organisations are the main source of personal assistance outside the family. Because of the importance of professional and vocational training in the German labour market, attempts will be made to fit a young disabled person into the career structure by means of vocational rehabilitation measures. If this attempt succeeds, levels of integration are likely to be high. If not, he or she may become a long-term recipient of social assistance, excluded from both paid employment and a decent standard of living. In Sweden, a young disabled person who claims disability pension is awarded a supplement to bring their entitlement to the minimum level for someone with previous employment, avoiding the need to claim social assistance. However, the pension would be lower than the average payment for someone who had worked, because there are earningsrelated supplements which apply to other claimants. There is a great reluctance to award disability pension to a young person, because receipt tends to become long-term, and attempts will be made to find work for them, but this will often be in a sheltered workshop rather than in the open labour market. Benefits are available in respect of personal assistance, transport, and the additional costs of disability, none of which depend on income. Payments may be made to fund care by a relative or a personal assistant if care needs exceed 20 hours per week. If the disabled person obtains their own accommodation, there is no real change in the level of benefits and services available.

Becoming disabled in mid-life The second case was that of a man in his 30s, married with two children, who becomes disabled as the result of an accident, uses a wheelchair, and has moderate (day-time) care needs. His partner is caring for the children, and not employed, at the time he becomes disabled. This is the type of case for which most social security benefits for disabled people are implicitly designed, because of their origins in industrial and war injuries schemes. Assessment of disability is often based on the degree of functional limitation. However, such benefits do not always take into account family structure, or the earnings disincentives which may arise in a couple household. This person would be very likely to lose his job in Britain, and would find it difficult to obtain further employment having done so. The level of disability benefits payable is such that the family would

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usually need to claim social assistance. If he took up a low-paid job, the disabled person could claim Disabled Person’s Tax Credit, but this may act as a disincentive for his partner to work. Equally, if his partner took up low-paid work, she could claim Working Families’ Tax Credit, although this would then create a disincentive for the disabled person to work. Benefits are available to meet mobility and personal assistance costs in Britain. The assumption would be that the disabled person’s partner would be the main provider of personal assistance. A benefit for the partner as carer is available only if care is provided for at least 35 hours per week. It is partially offset against social assistance, and is not compatible with more than a minimal level of earnings. In Sweden, a person who becomes disabled may retain their employment, but they would also have a reasonable chance of obtaining alternative employment if they lost their job. Disability benefit can be paid at several rates, depending on official assessment of remaining work capacity; even at partial rates, the level of benefit is such that the family is unlikely to have to claim social assistance, so that there is no disincentive for the disabled person’s partner to take employment. The disabled person is able to take part-time work, while continuing to receive benefits, but although this incentive exists, the opportunities for part-time work are limited. Benefits are payable in respect of additional costs, including transport needs. Unless needs for personal assistance exceeded 20 hours per week, it would be assumed that his partner would provide personal assistance, although some additional help may be available from municipal social services on a discretionary basis. In Germany, this person would be likely to retain his employment. If he wished to work part-time it would be possible for him to claim a partial disability benefit. However, there is a shortage of opportunities to work part-time, so that in reality the choice would be between working full-time or not at all. Benefits are available in respect of care needs. Tax allowances for transport are available, and there are a large number of ‘chauffeur’ services, financed by social assistance, which provide transport at a local level. In all three countries, if the non-working partner became disabled, she would be very much less likely to qualify for benefits, because of contributions conditions. This is less common in Sweden, where most mothers are in full-time employment, than in Germany or Britain, where part-time work, or absence from the labour market, is more frequent. It has implications for the long-term poverty of women, because of the impact on future retirement pension entitlement.

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Conclusion and policy implications

The ‘discouraged worker’ The third case is that of a worker aged around 50 years, disabled but with no personal assistance needs, living with a partner. Statistically the most prevalent case, older workers with a record of poor health and chronic illness rather than necessarily a functional impairment do not fit the stereotype which most people hold of a disabled person, nor are their needs well catered for either in social security or labour market policy. In social security policy, this group often fall foul of boundary changes which define them variously as unemployed, disabled or retired (Stone, 1984; Kohli et al, 1991). Such classifications may have important implications for both the level of benefit paid and the conditions of entitlement. Older workers who leave a job because of disability are highly unlikely to find future work in Britain. If they do so, they are likely to suffer a gradual decline in work opportunities and pay, which may affect income in retirement, and can act as a deterrent to remaining in work. Disabled people can receive Incapacity Benefit if they have paid National Insurance contributions and are able to pass a strict test which shows that they are incapable of all work. Those with interrupted work records, particularly women, often fail to qualify and will lose the right to claim alternative benefits from April 2001. Incapacity Benefit is paid at a flat rate and not means tested, so creates no disincentive for a partner to work. It is not compatible with part-time work (except in a very restricted range of circumstances); disabled people who take up low paid work may claim Disabled Person’s Tax Credit, which is means tested. People who are unable to establish that they are incapable of work must register as unemployed to receive benefits. Jobseeker’s Allowance can be paid without a means test for the first six months, but after this period is subject to a household means test. If a partner is working, there will be very little incentive for him/her to do so from this point. Older disabled workers in Sweden are likely to leave the workforce permanently, but later than their counterparts in Britain and Germany, and often after a period of part-time work. They may be on either a full or partial disability pension, and will not usually be entitled to social assistance. There are no disincentives for a partner to work. If the disabled person does find work they can carry on receiving a partial disability pension, provided that they are not working full-time. However, the availability of part-time work means that more women than men combine work and disability pension. For older workers in Germany, losing a job because of disability is a

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common pathway into early retirement and the receipt of retirement pension (Kohli et al, 1991). Unskilled older disabled workers in Germany only qualify for pension if they are completely unable to work, as in Britain. People with an interrupted work history, such as women who have spent time out of the labour market caring for children, are unlikely to qualify for disability pension. Those with recent insurance contributions who are assessed as capable of some work can claim unemployment assistance. As this is time-limited there is a strong likelihood of claiming social assistance after a short period. This has negative effects for a partner’s earnings incentives, and may also create disincentives to the disabled person taking part-time work. There is a different system for skilled workers, who are able to combine partial disability benefit and part-time employment. However, the availability of part-time work is a limiting factor, particularly for men, as in Sweden.

Disability and welfare state typologies Assessing the three welfare states on conventional criteria, even where these are applied to disabled people, does not result in a revision of existing welfare typologies. The results are, however, rather different if welfare states are compared on the basis of indicators which are particularly important to disabled people, as the following sections discuss.

Conventional criteria In Sweden, a high level of replacement incomes for those not in the labour market is typical of social democratic welfare state regimes. Unemployment or early retirement does not result in poverty; thus the level of decommodification is high. At the same time, levels of recommodification are also high, as is evidenced by the employment rates for disabled people. Since the survey data were collected, in early 1991, levels of unemployment have risen (albeit less among disabled than non-disabled workers), worsening the situation (Thornton et al, 1997). Benefit levels have been somewhat reduced in real terms by the use of de-indexation. This is a mechanism which is again highly typical of a social democratic regime, since it reduces all benefits equally. By contrast liberal or conservative welfare states tend to approach the issue of reducing social security expenditure by redefining the conditions of eligibility, a strategy which results in the creation of insider/outsider groups, which tends to reduce overall levels of commitment to the welfare state among the population as a whole (Pierson, 1991).

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Conclusion and policy implications

Germany stands out as a country whose classification as a corporate or conservative welfare state regime is confirmed by the analysis. Germany has lower employment rates than Sweden among disabled people, although they are higher than those in Britain. As in Sweden and Britain, there is some evidence of segregation in the labour market, with disabled people enjoying poorer rewards from working. Germany is particularly successful at reducing pre-transfer rates of poverty for disabled people, and, as in Sweden, disabled people are less likely than other groups to be poor. The fact that the family is seen as the care provider of choice for disabled people, and that other services are typically provided by charitable or religious bodies is also typical of a conservative regime. Britain, as noted above, has become increasingly influenced by neoliberal policies, leading to increasing income inequalities and high rates of poverty for those unable to compete in the market. Benefit cuts have generally been achieved by higher definitions of eligibility, rather than reducing them across the board.

The employment of disabled people The employment rates of disabled people vary strongly between the three countries, which is consistent with their very different levels of commitment to active labour market intervention on behalf of disabled people. At the time the survey data were collected, over 70% of disabled men in Sweden were employed or self-employed, compared with just over half in Germany, and under half in Britain1. The pattern is different for women, reflecting different models of female employment in the three countries. The employment rates for disabled women were highest in Sweden, where almost two thirds were in work, and lowest in Germany, where two thirds of disabled women are out of the labour market. Disabled women in all three countries are less likely than other women to work part-time, and disabled men are no more likely than nondisabled men to work part-time, except in Britain, where a significant minority of disabled men work part-time. Disabled people in Britain are very much more likely than disabled people in either of the other two countries never to have had paid employment, again an indication of the importance of active labour market policies in securing employment for disabled people. At the other end of the life cycle, Sweden appears to be the most successful of the three countries in keeping older disabled workers in employment. Employment has benefits over and above its importance as a source

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of income and is clearly a key component of citizenship. Adults who are excluded from the labour market may lose out not only in income terms but in terms of social integration, social support and friendship. However, employment on poorer terms than other workers represents a damaged or incomplete realisation of citizenship rights. Equally, citizenship rights which are dependent on employment will always exclude substantial groups of people who are unable to work, whether they are disabled people, women with young children, or older people.

The living standards of disabled people Disabled and non-disabled people have similar income distributions in Sweden and Germany, whereas disabled people in Britain are much more likely to be in low income groups; over a quarter are poor, compared to 16% in Sweden and fewer than 10% in Germany. This is partly because of their concentration in households with no earners, but is mainly a reflection of the level of benefits available. More than four out of five disabled people in no-earner households in Britain are poor, compared to less than a third in Sweden. In Germany, the benefits paid to a disabled person are usually supplemented by other forms of income, whether their own earnings or those of someone else in the household. In Britain, by contrast, almost one in eight disabled people of working age lives in a household where benefits are the only source of income. This is likely to result in poverty and reduced social participation for the disabled person, and also has large public expenditure implications. Disabled people generally experience less flexibility than non-disabled people within a given level of income, because of the extra costs of disability. Thus in both Britain and Sweden disabled people who are not poor are more likely than non-disabled people to report financial difficulties. This may also be one reason for the lack of satisfaction with living standards expressed by disabled people in Germany. There is some evidence of convergence between the three countries in the recent trend of disability policies, particularly in respect of income and employment policies. Eligibility criteria for disability benefits have been tightened in all three countries, and the rehabilitation benefits available in Germany and Sweden have become more limited in scope and amount. However, there remains much more emphasis on means testing in the British system, which has implications for living standards and for work incentives.

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Conclusion and policy implications

Personal assistance In all three countries, the situation of disabled people is closely linked to that of women, because of the assumptions which are made about the provision of family care, confirming the insights which feminist research has offered into welfare state typologies (Lewis, 1992; Sainsbury, 1994, 1996). Thus in Sweden, women and disabled people both enjoy higher levels of formal autonomy about personal care and family issues than they do in Britain or Germany. The countries show most difference in the field of personal assistance, consistent with Alber’s (1995) hypothesis about the convergence of incomes alongside divergence in social services policies. The case of the youngest person in the three examples provides an illustration of the different approaches which the three countries have to defining the responsibilities of parents towards a young disabled adult. In Germany, a young disabled person living at home is treated as part of the parents’ household, and has only a limited degree of independence both financially and in terms of the provision of personal assistance. In Britain, while a young person would be treated as economically independent, the family would be regarded as the major providers of personal assistance unless he took the decision to leave home. In Sweden the situation is more neutral, since similar benefits and services are available either in the parental home or in an independent household, so that the possibilities of autonomous choice appear to be greater. In all three countries, it is assumed that a partner will provide some level of care for a disabled person who has personal assistance needs. In Germany, the expectation that care will be provided is explicit, but not quantified. In Britain, carers are eligible for benefit only if the amount of assistance is equal to a standard working week of 35 hours, and receive only a low rate of benefit which cannot be equated with a wage. In Sweden, the level of expectation is made explicit; people with care needs over 20 hours have automatic rights to personal assistance services, whether from a relative or an outside source, which are remunerated at commercial rates. This effectively creates a wage for caring. In contrast to Britain, where as Ungerson (1997) has noted, disabled people employing personal assistants are generally unable to offer good conditions of employment, because funding conditions do not cover costs such as employer’s national insurance or the costs of finding replacement staff to cover holidays, personal assistants in Sweden receive all the benefits of conventional employment, such as paid leave, insurance contributions and maternity leave.

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Anti-discrimination legislation For disabled people, legal rights may also be important in determining the quality of life, and these are strongly related to the strength of the disability movement in each country. It is here that disability reveals different aspects of welfare state regimes, revealing the weakness of both the ‘statist’ social democratic regime and the subsidiarity principle embedded in the conservative welfare state in responding to needs expressed in terms of individual self-determination and protection against discrimination. British disability policy appears somewhat paradoxical when viewed in this light. The approach to disability policy in Britain is, if anything, more inclined to the liberal model of welfare state provision than other aspects of its social policy. This has become particularly apparent over the past five years or so. Existing legislation, albeit ineffectively policed, which aimed to ensure the representation of disabled people in the workplace, has been replaced by limited anti-discrimination legislation giving individuals rights to counter discrimination in employment and in the provision of goods and services. Thornton and Lunt argue that: The crusade for ‘civil rights’ has helped justify the retreat from policies of social obligation and the dismantling of practices which, in theory at least, protected the employment position of disabled people. (Thornton and Lunt, 1995, p 1)

In opting for this type of policy response, as opposed to measures aimed at addressing barriers at a social level, Britain has confirmed its affinity with the other ‘liberal’ or ‘Anglo-Saxon’ welfare states – Australia, Canada and the USA – which have also adopted similar (although more wideranging) anti-discrimination legislation in respect of disabled people. The implicit nature of family obligations is also suggestive of a ‘liberal’ welfare state, as is the growth of commercial care services, a development noted by Anttonen and Sipilä (1995). However, the existence of nonmeans-tested benefits for additional costs, the creation of carer’s benefits, and the increased coverage of such benefits in recent years, paint a slightly different picture. In itself this is probably not enough to place Britain in the ‘radical’ group of welfare states posited by Castles and Mitchell (1992), but it is a reminder of the contradictions underlying the British welfare state, which so often finds itself torn between the impulse to make universal provision, and the use of means testing and other selective mechanisms (Hills et al, 1994).

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Conclusion and policy implications

Looking at the employment rates and material living standards enjoyed by disabled people in the three countries, it is not difficult to see why Britain has had a particularly strong disability movement. Quite simply, disabled people in Britain have had a second-class existence, achieving similar living standards to non-disabled people who are poor, rather than non-disabled people as a whole. However, this is only part of the story. In terms of enacting anti-discrimination legislation, Britain has been a leader compared to Sweden and Germany. The granting of legal rights, however may also be understood more cynically, as an alternative, rather than a complement, to social rights (Marshall, 1950). Thus, the introduction of anti-discrimination legislation in Sweden may also presage an increasingly Liberal approach to social policy for disabled people, a trend which Thornton and Lunt (1995) have identified in respect of Britain: We should be wary of confusing independence with individual responsibility. Recent Government policy documents promoting the independence of disabled people have smuggled into the discussion notions of individual responsibility. The challenge is to reconcile this emphasis on rights and individualism with collective responsibility.... (Thornton and Lunt, 1995, p 47)

Policy implications Employment Employment and income have the potential to affect levels of individual well-being, whether negatively or positively. Disabled people in Sweden report reduced levels of well-being which are independent of their economic situation, but employment is associated with increased levels of well-being. Paid work has an important effect on British respondents’ feelings of playing a valued social role, although the effect appears weaker for disabled than non-disabled people. Overall, disabled people in Britain, and particularly disabled women, have lower levels of well-being than non-disabled people; the differences appear to be more strongly related to income and employment status than to the experience of disability itself. This highlights the importance of policies to increase employment rates among disabled people. While the New Deal for Disabled People has enabled some innovative approaches to employment to be funded, it is still essentially a supply-side policy when a large body of evidence suggests that labour market demand is the primary issue. This must

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raise questions not only about its likely success rate, but about its potential impact on disabled people who do not manage to secure employment (Rowlstone, 2000). There remains a need to improve income levels for those who are not able to participate in employment, or can only work part-time. Knowledge of the links between income, employment, and well-being for disabled people may also enable service providers to develop services for those most at risk of isolation and reduced wellbeing.

Earnings replacement benefits A social security policy which took account of the social model of disability would not need to distinguish between a person with impairments and a person without when they were unemployed; an earnings-replacement benefit would be available to both. For people whose impairments meant that they were working part-time, a proportionate rate of benefit could be paid. However, a flat-rate or ‘citizen’s income’ approach would tend to disadvantage disabled people, because they are likely to experience longer periods out of the labour market. Benefits would also need to be linked to average earnings or a minimum wage in order to avoid the risks of creating poverty for those who can only work part-time. An emphasis on means-tested benefits has a particularly negative effect on work incentives, both for the disabled person and for other members of their household, particularly a partner. Britain has the highest proportion of disabled people living in households where benefits are the only source of income, and many of these households will be dependent on social assistance. In Germany, benefit income is almost always a supplement to other sources of household income such as earnings. Individualised, or non-means-tested, benefits, which do not depend on the income of other household members, create the strongest incentives to work. Partial capacity benefits have the potential to enable a disabled person to realise their work capacity, but they appear to be under-used, mainly because of lack of labour market demand (Thornton et al, 1997). There is also a real need for earnings replacement benefits for disabled people to take account of interrupted work records.

Additional costs The additional costs of impairment should logically be reduced as barriers in society are removed; for instance where public transport is accessible,

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the need for expensive private transport solutions will be reduced. Where barriers for an individual still exist, as in Britain, where transport remains a significant barrier both to employment and to wider social participation (Barnes et al, 1998; Christie et al, 2000) there is a need for payments to meet the additional costs incurred. The scope of such payments and the range of barriers to be addressed is one area of debate. How such benefits are provided may also have major implications for work incentives. An individual’s social and community activities will be reduced if the overall level of benefit paid is too low to enable participation in the usual activities of a society (Townsend, 1979; Murdock, 1986). As the analysis in preceding chapters has shown, disabled people require more income than non-disabled people in order to be able to participate at the same level, because of the additional costs of disability. This highlights the need for social security or tax provision to recognise these additional costs, regardless of whether or not the disabled person is in employment. However, in order to ascertain the costs of disability more effectively, surveys could also usefully distinguish both the reasons for not possessing an item or engaging in an activity, and the amounts spent on particular disability-related needs. Many disability benefits (and means tests for charging purposes) recognise the essential activities of life, such as eating and sleeping, but do not include the costs of leisure and social activities (Oliver, 1996). In order for disabled people to participate in life on the same terms as non-disabled people, it is essential that social costs are recognised.

Administration of benefits The administration of benefits is also important. Recent emphasis on the detection of fraudulent claims in Britain has tended to create an atmosphere of defensiveness which has not helped the debate about the long-term reform of disability benefits. Intrusive questioning and medical examinations are particularly difficult to reconcile with a social model of disability. This has been raised as in an issue by the disability movement in Sweden, which, as Millar and Warman (1996) have argued, is typical of the Nordic countries, in that, while committed to the formal autonomy of family members, and to individual benefits, it has less respect for individual privacy, and has created a powerful welfare bureaucracy. Howard (1999) has highlighted the problem of multiple assessments in Britain, and proposed mechanisms whereby an assessment carried out for one purpose can satisfy the requirements of another. The use of

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discretion in benefits and services provides scope for discrimination, as well as an undesirable degree of local variation in provision, and it is important to develop minimum standards as a baseline (Audit Commission, 2000).

Social care services In all three countries, disabled people are more likely than non-disabled people to live alone or with one other person, usually a partner. This is related to their age profile, because the incidence of disability increases with age. However, it may have an impact both on the number of social contacts and on the level of social support available. Disabled people have lower social support scores than non-disabled people in both Sweden and Britain, but they are generally fairly high, although a small minority of disabled people in Sweden appear to be very lacking in social support. Limitations of available data, in particular the small sample sizes for sub-populations of disabled people, mean that it is not possible to explore fully the reasons for such differences, but being disabled, male, out of work or poor are all associated with reduced levels of social support. This highlights the need to develop appropriate services for this group. Policies which took account of the social model of disability would neither require family members to provide care, nor act as a disincentive for them to do so. The choice, however, needs to lie in the hands of the disabled person. In other words, the incentives to provide personal assistance should not be such as to create pressure on a disabled person to have these needs met by family members regardless of their wishes. This seems an unlikely scenario, in view of the generally low amounts of financial support which are available to carers, but was mentioned as an issue for young severely disabled people in Sweden, who sometimes find that their parents are reluctant for them to leave home, because of the income they will lose (De Handikappade Riksforbund Ung [youth sector] personal communication, 1995). Funding for personal assistance in Britain is set at a level which fails to provide decent conditions of employment for those providing assistance, and stringent conditions of entitlement mean that the disabled person is not always able to take part in employment and social activities. Extension of the current direct payments scheme, to provide both a guarantee of payments and ring-fenced funding for this purpose, would go some way to address this problem. However, this should also be

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matched by a guarantee of services in kind for those who do not wish to manage personal assistants themselves. Where charges are made for personal assistance, variation by area, by income and by severity of impairment can all create issues of equity, as well as undermining work incentives. Personal assistance legislation in Sweden guarantees that disabled people with substantial care needs will have these met, and underwrites this by providing centralised funding. In Britain, locally-based charging systems are somewhat at odds with the context of a centralised system for income maintenance and offer few mechanisms for accountability (Baldwin and Lunt, 1996; Audit Commission, 2000; Jamieson, 1991). For people receiving Disabled Person’s Tax Credit, no account is taken of any charges which must be paid for personal assistance, thus undermining the intended income guarantee. While in the medium term it is clear that the structure of charging policies requires a much greater degree of standardisation, in the short term it would not be difficult to take account of charges in assessing the amounts due for people in this situation. The arrangements made for childcare expenses where families are receiving Working Families’ Tax Credit could act as one possible model.

Anti-discrimination legislation Although the DDA has now been in force for almost five years, public awareness of it, even people among disabled people, remains low, and there is a view that tactics of education and persuasion should be adopted, particularly in relation to employers (Christie et al, 2000). However, increasing the numbers of disabled people in work, and enabling people who became disabled in work to retain their jobs, is likely to require an increased use of legal remedies in the medium term. The creation of a power to bring ‘class actions’ which would benefit groups of disabled people, as recommended by the final report of the Disability Task Force, would be a major step in this direction. The extension of anti-discrimination legislation to provide a remedy against indirect discrimination is urgently required (Disability Task Force, 2000). Although a large number of cases have been brought under the existing legislation, experience with sex and race legislation shows that indirect discrimination remains an important source of disadvantage, even once more overt acts of discrimination have been outlawed. Sweden has included indirect discrimination in its legislation on the basis of evidence from other countries with experience in the operation of anti-discrimination legislation (Barnes, 1998;Yngwe, 2000, information

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section of the Office of the Swedish Disability Ombudsman, personal communication). Britain would also be wise to follow the Swedish example in including such acts as denying someone access to workrelated education or training, or failing to vary their workload, as acts of discrimination. A recent review of research on the employment of disabled people (Barnes et al, 1998) found that such practices were both widespread and difficult to combat.

Generally As Howard (1999) has argued, there are many instances of ‘silo government’, such as the interaction between income policies and charging, where the policies of different government departments are not integrated. This is a major barrier to providing effective polices for disabled people in Britain, and one which requires a culture shift in the ways in which policies are designed and implemented. One recent argument (Christie and Mensah-Coker, 1999) is that disabled people should be seeking to find areas of common cause with other groups in campaigning. There is some logic to this view, not least because of benefits to all from, for instance, accessible transport. It is also true that we are all likely to be disabled, even if only temporarily, at some point in our lives. However, this approach also has dangers. Disabled people face a very specific set of barriers. They are entitled to expect society to remove them, whether or not this also has benefits for other sectors of the population.

The scope for further research This analysis of the living standards of disabled people has highlighted the importance of surveys which include both disabled and non-disabled people, rather than the ‘special’ surveys of disabled people which have been undertaken in the past (such as the OPCS surveys in Britain). However, it would be desirable for disabled people in such surveys to be over sampled in order that valid analysis of small populations, such as older disabled people in employment or disabled women with children, can be carried out. The harmonisation of indicators used to measure well-being, social and political activity and social life would permit these aspects to be studied in a rigorously comparative analysis, although at the cost of sacrificing some validity in the national context. The European Community Household Panel, with its harmonised indicators, offers some scope for cross-national comparison of this type, because of

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the inclusion of a limited amount of attitudinal data. However, the sample sizes for each country are small, limiting both reliability and the scope for analysis on sub-populations of disabled people. Disability appears to have some independent effects on the lives of individuals, affecting well-being and feelings of satisfaction with life. Further research is required in order to ascertain the extent to which this is intrinsic to the experience of living with an impairment or is the result of other barriers in the physical or social environment. The continuing explanatory power of particular impairments or their severity in some cases also highlights the tensions between the social model of disability and the need to take some account of impairment. Analysis of the social, economic and political participation of disabled people has demonstrated the importance of economic participation as a key to participation in the wider life of the community, not only because of its role in providing an income, but because of the way it encourages people to engage with wider aspects of social and political life. There is evidence of the potential of social policy to improve the quality of disabled people’s lives by improving their employment and living standards. However, several important questions about the role of employment remain unanswered. These include the effects of employment for different groups, including women, older people and those in part-time, voluntary or poorly paid work. The most crucial question, however, is whether social policies can provide a good quality of life, in the broadest sense, for those disabled people for whom paid work is not a possibility. Moreover, it is unlikely that employment alone is enough to guarantee the citizenship rights of those disabled people who can work; their full participation in the life of the community will require the demolition of many other physical and attitudinal barriers. Notes 1

Economic recession in the 1990s has reduced employment rates in Sweden and Germany, however.

113

References Abberley, P. (1987) ‘The concept of oppression and the development of a social theory of disability’, Disability, Handicap and Society, vol 2, no 1, pp 5-19. Abberley, P. (1991) ‘The significance of the OPCS surveys’, in M. Oliver (ed) Social work: Disabled people and disabling environments, London: Jessica Kingsley. Abberley, P. (1992) ‘Counting us out: a discussion of the OPCS disability surveys’, Disability, Handicap and Society, vol 7, no 2, pp 139-55. Abberley, P. (1996) ‘Work, utopia and impairment’, in L. Barton (ed) Disability and society – Emerging issues and insights, Harlow: Longman. Alber, J. (1995) ‘A framework for the comparative study of social services’, Journal of European Social Policy, vol 5, no 2, pp 131-50. Anttonen, A. and Sipilä, J. (1995) ‘European social care services: is it possible to identify models?’, Journal of European Social Policy, vol 6, no 2, pp 87-100. Arthur, S., Corden, A., Green, J., Loumidis, J., Sainsbury, R., Stafford, B., Thornton, P. and Walker, R. (1999) New Deal for Disabled People: Early implementation, DSS Research Report 106, London: The Stationery Office. Ashford, D.E. (1986) The emergence of the welfare states, Oxford: Blackwell. Atkinson, A.B. (1985) How should we measure poverty? Some conceptual issues, ESRC Programme on Taxation, Incentives and Distribution of Income, Discussion Paper No 82, London: London School of Economics. Audit Commission (2000) Charging with care – How councils charge for home care, Abingdon: Audit Commission. Aylward, M. (1995) ‘A new more objective assessment for capacity for work in the United Kingdom’, Paper presented at the International Research Seminar ‘Issues in Social Security’, 17-20 June, Sigtuna, Sweden.

115

Working for a living?

Backes-Gellner, U. and Frick, B. (1990) ‘Discrimination in employment in the Federal Republic of Germany’, Georgia Journal of International Comparative Law, vol 20, no 89, pp 105-21. Bahle, T. and Rothenbacher, F. (1996) ‘Developments in family policy in Germany in 1995’, in J. Ditch, H. Barnes and J. Bradshaw (eds) Developments in national Family policies 1995,York: Commission of the European Communities, pp 37-61. Bahle,T. (1998) ‘Developments in family policy in Germany 1996’, in J. Ditch, H. Barnes, and J. Bradshaw (eds) Developments in national family policies 1996,York: Commission of the European Communities. Baldock, J. and Ungerson, C. (1994) Becoming consumers of community care, York: Joseph Rowntree Foundation. Baldwin, S. and Parker, G. (1992) ‘Confessions of a jobbing researcher’, Disability, Handicap and Society, vol 7, no 2, pp 197-203. Baldwin, S. and Lunt, N. (1996) Charging ahead: The development of local authority charging policies for community care, Bristol/York: The Policy Press/Joseph Rowntree Foundation. Barbalet, J. (1988) Citizenship, Milton Keynes: Open University Press. Barnes, C. (1991) Disabled people in Britain and discrimination, London: Hurst. Barnes, C. (1992) ‘Disabilty and employment’, Personnel Review, vol 21, no 6. Barnes, C. (1998) ‘Discrimination and the law – the British experience’, Paper presented at Conference on Legislation for Human Rights, Stockholm, 25 September. Barnes, H.,Thornton, P. and Maynard Campbell, S. (1998) Disabled people and employment: A review of research and development initiatives, Bristol: The Policy Press. Benefits Agency (1993) A consultation on the medical assessment for Incapacity Benefit, London: Benefits Agency. Berthoud, R. (1993) Incapacity Benefit – Where will the savings come from?, London: Policy Studies Institute. Berthoud, R. (1995) ‘Social security, poverty and disabled people’, in G. Zarb (ed) Removing disabling barriers, London: Policy Studies Institute.

116

References

Berthoud, R. (1998) Disability benefits: A review of the issues and options for reform,York:York Publishing Services/Joseph Rowntree Foundation. Berthoud, R. et al (1993) The economic problems of disabled people, London: Policy Studies Institute. Blackaby, D., Clark, K., Drinkwater, S., Leslie, D., Murphy, P. and O’Leary, N. (1999) Earnings and employment opportunities of disabled people, DfEE Research Report 133, London: DfEE. Blunkett, D. (2000) Letter to Bert Massie, Chair of Disability Rights Commission, on the Commission’s Strategic Priorities, published at www.disability.gov.uk (March 2000). Bolderson, H. (1980) ‘The origins of the Disabled Persons Employment Quota and its symbolic significance’, Journal of Social Policy, vol 9, no 2, pp 169-86. Bolderson, H., Mabbett, D. et al (1997) Delivering social security: A crossnational study, Social Security Research Report No 59, London: The Stationery Office. Bradshaw, J. (1993) ‘Developments in social security policy’, in C. Jones (ed) New perspectives on the welfare state in Europe, London: Routledge. Bradshaw, J. and Holmes, H. (1989) Living on the edge, London:Tyneside Child Poverty Action Group. Bradshaw, J., Ditch, J., Whiteford, P and Holmes, H. (1993) Support for children, Department of Social Security Research Report No 21, London: HMSO. Brandt, F. (1984) Behinderte auf dem allgemeinem Arbeitsmarkt, Bonn: Bundesminsterium für Arbeit und Sozialordnung. Brauns, H. and Kramer, D. (1989) ‘West Germany: the break-up of consensus’, in B. Munday (ed) The crisis in welfare, Hemel Hempstead: Harvester Wheatsheaf, pp 124-53. Brown, R. and Scase, R. (eds) (1991) Poor work – Disadvantage and the division of labour, Milton Keynes: Open University Press. Brückner, H. (1995) ‘Research on the dynamics of poverty in Germany’, Journal of European Social Policy, vol 4, no 5. Buck, N., Gershuny, J., Rose, D. and Scott, J. (eds) (1994) Changing households: The British Household Panel Survey 1990-1992, Colchester: ERSC Research Centre on Micro-Social Change, Univerity of Essex.

117

Working for a living?

Buhr, P. and Weber, A. (1999) ‘Social assistance and social change in Germany’, in L. Leisering and R. Walker (eds) The dynamics of modern society, Bristol: The Policy Press. Burger, S. and Schröder, M. (1995) ‘Labour market policy for disabled people in Germany: the shortcomings of legal intervention’, in S. Bengtsson (ed) Employment of people with disabilities: Colloquium in connection with a research project, Copenhagen: Social Forsknings Institutet. Burkhauser, R. (1991) An introduction to the German socio-economic panel for English-speaking researchers, Cross-National Studies in Ageing Program Project Paper No 1, New York, NY: Syracuse University. Burkhauser, R. and Wagner, G. (1990) The German socio-economic panel user handbook, Berlin: Deutsches Institut für Wirtschaftsforschung. Burkhauser, R. and Daly, M. (1993a) Work and economic well-being: a crossnational comparison of German and American people with disabilities, CrossNational Studies in Aging Project Paper No 5, NewYork, NY: Syracuse University. Burkhauser, R. and Daly, M. (1993b) The importance of labor earnings for working age males with disabilities: a dynamic cross-national view, CrossNational Studies in Aging Program Project Paper No 11, New York, NY: Syracuse University. Bury, M. (1996a) ‘Disability and the myth of the independent researcher: a reply’, Disability and Society, vol 11, no 1, pp 111-13. Bury, M. (1996b) ‘Defining and researching disability; challenges and responses’ in C. Barnes and G. Mercer (eds) Exploring the divide: Illness and disability, Leeds: The Disability Press. Campling, J. (1981) Images of ourselves, London: Routledge and Kegan Paul. Carlsson, B. (1995) ‘Developments in the Swedish Early Retirement Scheme: The drive against high welfare expenditure and ill-health, Journal of Social Policy, vol 24, no 2, pp 193-217. Carpenter, M. (1994) Normality is hard work:Trade unions and the politics of community care, London: Lawrence and Wishart. Castles, F.G. (ed) (1989) The comparative history of public policy, Cambridge: Polity Press. Castles, F.G. (ed) (1993) Families of nations, Aldershot: Dartmouth.

118

References

Castles, F.G. and Mitchell, D. (1990) Three worlds of welfare capitalism or four?, Public Policy Paper No 21, Canberra,Australia:Australian National University. Castles, F.G. and Mitchell, D. (1992) ‘Identifying welfare state regimes: the links between politics, instruments and outcomes’, Governance, vol 5, no 1, January, pp 1-26. Christie, I. and Mensah-Coker, G. (1999) An inclusive future?, London: DEMOS/National Disability Council. Christie, I., Batten, L. and Knight, J. (2000) Committed to inclusion? The Leonard Cheshire social exclusion report 2000, London: Leonard Cheshire Foundation. Clasen, J. and Freeman, R. (1994) Social policy in Germany, Hemel Hempstead: Harvester Wheatsheaf. Clements, L. (1997) ‘Act of weakness’, Community Care, 8-14 January, pp 26-7. Cochrane,A. and Clarke, J. (eds) (1993) Comparing welfare states, London: Sage. Coleman, J. (1971) Resources for social change: Race in the United States, New York, NY: Wiley-Interscience. Coleman, J. (1990) Foundations of social theory, Cambridge, MA: Harvard University Press. Commission of the European Communities (1997) Employment in Europe 1997, Brussels: Commission of the European Communities. Community Care (1997) ‘Direct payments increase’, Community Care, 6-12 November. Corbet, B. (1993) ‘What price independence?’, in G. Whiteneck et al (eds) Aging with spinal cord injury, New York, NY: Demos Publications. Corbett, J. (1989) ‘The quality of life in the “independence” curriculum’, Disability, Handicap and Society, vol 4, no 2. Corbett, J. (1994) ‘A proud label: exploring the relationship between disability politics and gay pride’, Disability and Society, vol 9, no 3, pp 343-57. Council of Europe (1993) Legislation on the rehabilitation of people with disabilities 5th edition, Strasbourg: Council of Europe Press.

119

Working for a living?

CPAG (2000) Rights guide to non-means-tested benefits, London: CPAG. Cramer, H. (1991) ‘Initiatives taken by the German civil service’ in M. Floyd and K. North (eds) People with disabilities: Improving civil service employment opportunities in Britain and Germany, London:Anglo-German Foundation. Creswell, J. (1995) ‘Straight into the pocket’, Community Care, 6-11 January. Crewe, N. and Zola, I. (1983) Independent living for disabled people, London: Jossey-Bass. Crow, L. (1992) ‘Renewing the social model of disability’, Coalition, July, pp 5-9. Dalley, G. (1988) Ideologies of caring: Rethinking community and collectivism, London: Macmillan. Dalley, G. (ed) (1991) Disability and social policy, London: Policy Studies Institute. Dean, H. (1996) Welfare law and citizenship, Hemel Hempstead: Prentice Hall/Harvester Wheatsheaf. DeJong, G. (1979) ‘Independent living: from social movement to analytical paradigm’, Archives of Physical and Medical Rehabilitation, vol 60, pp 435-46. Denzin, N. (1978) The research act, New York, NY: McGraw-Hill. Department of Employment (1990) Employment and training for people with disabilities, London: HMSO. Disability Alliance (2000) Disability rights handbook, 2000-2001, London: Disability Alliance. Disability Task Force (2000) Final Report of the Disability Task Force, London: Inter-Departmental Task Force on Disability. Ditch, J., Barnes, H. and Bradshaw, J. (eds) (1996) Developments in national family policies 1995,York: Commission of the European Communities. Ditch, J., Bradshaw, J., Clasen, J., Huby, M. and Moodie, M. (1997) Comparative social assistance: Localisation and discretion,Aldershot:Ashgate. Donnison, D. (1975) Social policy and administration revisited: Studies in the development of social services at the local level, London: Allen and Unwin.

120

References

Donnison, D. (1994) Act local: Social justice from the bottom up, London: Institute for Public Policy Research. Doyal, L. (1993) ‘Human need and the moral right to optimal community care’, in J. Bornat, op cit. Doyal, L. and Gough, I. (1984) ‘A theory of human needs’, Critical Social Policy, vol 10. Doyal, L. and Gough, I. (1991) A theory of human need, London: Macmillan. Doyle, B. (1995) Disability discrimination – The new law, London: Jordans. Eardley, A. (1996) ‘Lessons from a study of social assistance schemes in the OECD countries’, in L. Hantrais and S. Mangen (eds) Cross-national research methods in the social sciences, London: Pinter. Eardley, A., Bradshaw, J., Ditch, J., Gough, I. and Whiteford, P. (1996) Social assistance in OECD countries: Synthesis report, DSS Research Report No 46, London: HMSO. Eaton, L. (1994) ‘Disability fund heads for massive underspend’, Independent, 4 January. Eikelmann, B. and Reker,T. (1993) ‘A second labour market – vocational rehabilitation and work integration of chronically mentally-ill people in Germany’, Acta Psychiatrica Scandinavica, vol 88, no 2, pp 124-9. Ellis, K. (1993) Squaring the circle – User and carer participation in needs assessment,York: Joseph Rowntree Foundation. Engberson, G. (1993) ‘Modern poverty and second-class citizenship’, in H. Coenen and P. Leisink (eds) Work and citizenship in the new Europe, Aldershot: Edward Elgar. Erens, B. and Ghate, D. (1993) Invalidity Benefit: A longitudinal survey of new recipients, London: HMSO. Erlanger, H. and Roth, W. (1985) ‘Disability policy: the parts and the whole’, American Behavioural Scientist, vol 28, no 3, pp 319-45. Esping-Andersen, G. (1985a) Politics against markets, Princeton, NJ: Princeton University Press. Esping-Andersen, G. (1985b) ‘Power and distributional regimes’, Politics and Society, vol 14, no 2. Esping-Andersen, G. (1990) The three worlds of welfare capitalism, Cambridge: Polity Press.

121

Working for a living?

Esping-Andersen, G. and Korpi,W. (1984a) ‘Social policy as class politics in post-war capitalism: Scandinavia, Austria and Germany’, in J.H. Goldthorpe (ed) Order and conflict in contemporary capitalism, Oxford: Oxford University Press. Esping-Andersen, G. and Korpi, W. (1984b) ‘From poor relief to institutional welfare states’, in R. Erikson et al (eds) The Scandinavian model: Welfare states and welfare research, New York, NY: Armonk. Evers,A., Pijl, M. and Ungerson, C. (1994) Payments for care:A comparative overview, Aldershot: Avebury. Finch, J. (1987) ‘Research note: the vignette technique in social research’, Sociology, vol 21, no 1, pp 105-14. Finch, J. (1989) Family obligations and social change, Cambridge: Polity Press. Finch, J. and Groves, D. (1983) A labour of love: Women, work and caring, London: Routledge and Kegan Paul. Finch, J. and Mason, J. (1993) Negotiating family responsibilities, London: Tavistock/Routledge. Frehe, H. (1995) ‘Mandatory employment or equal opportunities? Employment policy in Germany’, in K. Leichsenring and C. Strümpfel (eds) Mandatory employment or equal opportuntities? Employment policies for people with disabilities in the UN-European Region,Vienna: European Centre for Social Welfare Policy and Research. French, S. (1993a) ‘Disability, impairment or something in between?’, in J. Swain,V. Finkelstein, S. French and M. Oliver (eds) Disabling barriers, enabling environments, London: Sage Publications/Open University Press, pp 44-8. French, S. (1993b) ‘What’s so great about independence?’, in J. Swain,V. Finkelstein, S. French and M. Oliver (eds) Disabling barriers, enabling environments, London: Sage Publications/Open University Press. Fr ick, B. (1992) ‘Gruppenspezifische Lohnsubvetionen und Arbeitsvermittlung Schwerbehinderter’, in D. Sadowski, N. Brühl and R. Krütten (eds) Regionale Sozialpolitik, Frankfurt: Campus Verlag, pp 149-82.

122

References

Frick, B. and Frick, J.(1994) ‘Labour market policy and the convergence of interests: the “benefits” of the German Handicapped Act for employers and employees’, in J. Schwarze, F. Buttler and G. Wagner (eds) Labour market dynamics in present-day Germany, Frankfurt: Campus Verlag, pp 217-39. Furniss, N. and Tilton,T. (1977) The case for the welfare state, Bloomington, IN: Indiana University Press. Gallie, D., Marsh, C. and Vogler, C. (1994) Social change and the experience of unemployment, Oxford: Oxford University Press. Gartner, A. and Joe, T. (1987) Images of the disabled, disabling images, New York, NY: Praeger. George, M. (1995a) ‘Put to the test’, Community Care, 18-25 March. George, M. (1995b) ‘Charged to survive’, Community Care, 6-11 January. Ginsburg, N. (1991) ‘The wonderful world(s) of welfare capitalism’, Critical Social Policy, vol 31, pp 72-83. Ginsburg. N. (1992) Divisions of welfare, London: Sage Publications. Glover, J. (1996) ‘Epistemological and methodological considerations in secondary analysis’, in L. Hantrais and S. Mangen (eds) Cross-national research methods in the social sciences, London: Pinter. Golding, P. (ed) (1986) Excluding the poor, London: Child Poverty Action Group. Gooding, C. (1994) Disabling laws, enabling acts, London: Pluto. Gould,A. (1988) Conflict and control in welfare policy – The Swedish experience, Harlow: Longman. Grundy, E., Ahlburg, D., Ali, M., Breeze, E. and Sloggett, A. (1999) Disability in Great Britain, DSS Research Report No 94, London: The Stationery Office. Grunow, D. (1986) ‘Debureaucratisation and the self-help movement: towards a restructuring of the welfare state in the Federal Republic of Germany?’, in E. Oyen (ed) Comparing welfare states and their futures, Aldershot: Gower. Gundelach, P. (1993) ‘New social movements in the Scandinavian countries’, in T. Boje and S. Olsson Hort (eds) Scandinavia in a new Europe, Oslo: Scandinavian University Press, pp 337-62.

123

Working for a living?

Hahn, H. (1988) ‘The politics of physical differences: disability and discrimination’, Journal of Social Issues, vol 44, pp 39-47. Halleröd, B. (1995) ‘The truly poor: direct and indirect consensual measurement of poverty in Sweden’, Journal of European Social Policy, vol 5, no 2, pp 111-29. Hammerschmidt, M. (1992) Behindertenverbände im sozialpolitikischen Entscheidungsprozess, Frankfurt: Campus Verlag. Handikapp Ombudsmannen (1995 and annually) Report to the government 1994/5, Stockholm: Office of the Disability Ombudsman. Hanefield, U. (1984) ‘The German Socio-Economic Panel’, in Proceedings of the social statistics section, Washington DC: American Statistical Association. Hantrais, L. and Mangen, S. (eds) (1996) Cross-national research methods in the social sciences, London: Pinter. Hass, U. and Jonsson, D. (1994) ‘Welfare consequences of the Swedish disability service system’, Scandinavian Journal of Social Welfare, vol 3, no 2, pp 6-65. Hearn, K. (1991) ‘Disabled lesbians and gays are here to stay’, in T. Kaufman and P. Lincoln (eds) High risk lives: Lesbian and gay politics after the clause, Bridport: Prism Press. Heclo, H. (1974) Modern social politics in Sweden and Britain, New Haven, CT:Yale University Press. Hedström, P. (1987) ‘Disability pension: welfare or misfortune’, in R. Erikson et al (eds) The Scandinavian model:Welfare states and welfare research, New York, NY: Armonk. Held, D. (1989) Political theory and the modern state, Cambridge: Polity Press. Hills, J., Ditch, J. and Glennerster, H. (1994) Beveridge and social security, Oxford: Clarendon Press. Hirst, J. (1997) ‘New Deal – old barriers’, Community Care, 30 October5 November. Hirst, M. and Baldwin, S. (1994) Unequal opportunities – Growing up disabled, London: HMSO.

124

References

Howard, M. (1997) Investing in disabled people: A strategy from welfare to work, London: Disablement Income Group. Howard, M. (1999) Enabling government: Joined up policies for a national disability strategy, London: Fabian Society. Howells, S. (1978) ‘The importance of being human’, in J. Tanur et al (eds) Statistics: A guide to the unknown, California: Holden-Day. Hudson, B. (1994) ‘Independent living for people in Britain with a severe disability; too successful by half? The case of the Independent Living Fund’, Critical Social Policy, vol 40, pp 88-96, Summer. Hughes, R. (1998) ‘Considering the vignette technique and its application to a study of drug injecting and HIV risk and safer behaviour’, Sociology of Health and Illness, vol 20, no 3, pp 381-400. Hurst, R. (1995) ‘Choice and empowerment – lessons from Europe’, Disability and Society, vol 10, no 4, pp 529-34. Hyde, M (1996) ‘Fifty years of failure: employment services for disabled people in the UK’, Work, Employment and Society, vol 10, no 4, pp 683700. Jahoda, M. (1982) Employment and unemployment, Cambridge: Cambridge University Press. Jamieson,A. (1991) ‘Community care for older people. Policies in Britain, West Germany and Denmark.’, in G. Room (ed) Towards a European welfare state, Bristol: SAUS, University of Bristol. Joseph, K. and Sumption, J. (1979) Equality, London: John Murray. Joshi, H., Davies, H. and Land, H. (1996) The tale of Mrs Typical, London: Family Policy Studies Centre. Kaufman, C. (1986) ‘Role obligations and health status in chronic disease: the experience of men and women with arthritis’, Disability, Handicap and Society, vol 1, no 3, pp 261-71. Keith, L. (1992) ‘Who cares wins? Women, caring and disability’, Disability, Handicap and Society, vol 7, no 2, pp 167-75. Kemeny, J. (1995) ‘Theories of power in The Three Worlds of Welfare Capitalism’, Journal of European Social Policy, vol 5, no 2. Kestenbaum, A. (1996) Independent living:A review,York,York Publishing Services.

125

Working for a living?

Kestenbaum, A. with Cava, H. (1998) Work, rest and pay – the deal for personal assistance users,York:York Publishing Services/Joseph Rowntree Foundation. Kohli, M., Rein, M., Guillemard, A-M. and Gunsteren, H. (eds) (1991) Time for retirement: Comparative studies of early exit from the labour force, Cambridge: Cambridge University Press. Korpi, W. (1983) The democratic class struggle, London: Routledge and Kegan Paul. Kutner, N.G. (1984) ‘Women with disabling health conditions: the significance of employment’, Women and Health, vol 9, no 4, pp 21-31. Laczko, F. and Phillipson, C. (1991) ‘Great Britain: the contradictions of early exit’, in M. Kohli, M. Rein et al (eds) (1991) Time for retirement: Comparative studies of early exit from the labour force, Cambridge: Cambridge University Press. Lakey, J. (1994) Caring about independence, London: Policy Studies Institute. Lamb, B. and Layzell, S. (1994a) Disabled in Britain:A world apart, London: Scope. Lamb, B. and Layzell, S. (1994b) Disabled in Britain: Counting on community care, London: Scope. Landwehr, P. (1992) ‘Information on social services in Germany’, in B. Munday (ed) Social services in the member states of the European Community: A handbook of information and data, Canterbury: University of Kent. Langan, M. and Ostner, I. (1991) ‘Gender and welfare: towards a comparative framework’, in G. Room (ed) Towards a European welfare state?, Bristol: Saus Publications, University of Bristol. Leibfried, S. (1993) ‘Towards a European welfare state’, in C. Jones (ed) New perspectives on the welfare state in Europe, London: Routledge. Lewis, J. (1992) ‘Gender and the development of welfare regimes’, Journal of European Social Policy, vol 2, no 3, pp 159-73. Liberty (NCCL) (1994) Access denied: Human rights and disabled people, Human Rights Convention Report 7, London: Liberty. Lister, R. (1990) The exclusive society: Citizenship and the poor, London: Child Poverty Action Group.

126

References

Lloyd, M. (1992) ‘Does she boil eggs? Towards a feminist model of disability’, Disability, Handicap and Society, vol 7, no 3, pp 207-21. Locker, D. (1983) Disability and disadvantage, London: Tavistock. Lonsdale, S. (1990) Women and disability, Basingstoke: Macmillan. Lonsdale, S. (1993) Invalidity Benefit – An international comparison, London: DSS Social Research Branch. Lonsdale, S., Lessof, C. and Ferris, G. (1993) Invalidity Benefit: A survey of recipients, London: HMSO. Lorenz, W. (1994) Social work in a changing Europe, London: Routledge. Lunt, N. and Thornton, P. (1994) ‘Disability and employment: towards an understanding of discourse and policy’, Disability and Society, vol 9, no 2, pp 223-38. Lunt, N. and Thornton, P. (1997) ‘Researching disability employment policies’, in C. Barnes and G. Mercer (eds) Doing disability research, Leeds: The Disability Press. Mack, J. and Lansley, S. (1984) Poor Britain, London: Allen and Unwin. Mack, J. and Lansley, S. (1992) Breadline Britain in the 1990s, London: Harper Collins. Marklund, S. (1988) Paradise lost? The Nordic welfare states and the recession 1975-1985, Lund: Arkiv. Marklund, S. and Svallfors, S. (1985) Dual welfare: Segmentation and work enforcement in the Swedish welfare system, Research Report No 94, Umea: University of Umea. Marshall,T.H. (1950) Citizenship and social class, Cambridge: Cambridge University Press. Marshall, T.H. (1981) Reflections on welfare and other essays, London: Heinemann. Martin, J., Meltzer, H. and Elliott, D. (1988) The prevalence of disability amongst adults, London: HMSO. Martin, J. and White, A. (1988) OPCS surveys of disability in Great Britain: Report two – the financial circumstances of individuals living in private households, London: HMSO.

127

Working for a living?

Martin, J., White, A. and Meltzer, H. (1989) Disabled adults in private households: Employment, social services and mobility, London: HMSO. Maslow,A. (1954) Motivation and personality, NewYork, NY: Harper Row. McClements, L. (1977) ‘Equivalence scales for children’, Journal of Public Economics, vol 8, no 2. McLaughlin, E. (1994) Flexibility in work and benefits, London: Institute for Public Policy Research. Mead, L. (1986) Beyond entitlement:The social obligations of citizenship, New York, NY: Free Press. Meager, N., Doyle, B., Evans, C., Kersley, B., Williams, M., O’Regan, S. and Tackey, N. (1999) Monitoring the Disability Discrimination Act, DfEE Research Report No 119, London: DfEE. Meehan, E. (1993) Citizenship and the European Community, London: Sage Publications. Millar, J. and Warman, A. (1996) Family obligations in Europe, London: Family Policy Studies Centre. Ministry of Health and Social Affairs International Secretariat (1993) Act concerning Support and Service for Persons with Certain Functional Impairments and the Assistance Benefit Act (LSS), Stockholm: Ministry of Health and Social Affairs. Ministry of Health and Welfare (1991) Disability, welfare justice – Report of the 1989 Disability Commission, Stockholm: Allmänna Förlaget. Ministry of Health and Welfare (1992) A society for all – Final report of the 1989 Disability Commission, Stockholm: Allmänna Förlaget. Ministry of Health and Welfare (1997) Aktivt lönebidrag: Ett effektivare stöd för arbesthandikappade, Stockholm: SOU. Mishra, R. (1984) The welfare state in crisis, Brighton:Wheatsheaf Books. Mitchell, D. (1991) Income transfers in ten welfare states,Aldershot:Avebury. Moore, J. (1989) The end of the line for poverty, London: Conservative Political Centre. Morris, J. (1989) Able lives, London: Women’s Press. Morris, J. (1991) Pride against prejudice, London: Women’s Press.

128

References

Morris, J. (1993) Independent lives: Community care and disabled people, Basingstoke: Macmillan. Morris, J. (1994a) ‘Rights muddle’, Community Care, 21-31 July, pp 223. Morris, J. (1994b) ‘Community care or independent living’, Critical Social Policy, vol 40. Morris, J. (1994c) Your rights to housing and support, London: Spinal Injuries Association. Munday, B. (ed) (1992) Social services in the member states of the European Community: A handbook of information and data, Canterbury: University of Kent. Murdock, G. (1986) ‘Poor connections: income inequality and the “information society”’, in G. Murdock and P. Golding (eds) Excluding the poor, London: Child Poverty Action Group. National Consumer Council (1995) Charging consumers for social services, London: National Consumer Council. National Council for the Disabled (1993) Associations and societies of the disabled in Sweden – Directory 1993, Stockholm: National Council for the Disabled. National Social Insurance Board (1993) Social insurance statistics – Facts 1993, Stockholm: National Social Insurance Board. O’Connor, J. (1993) ‘Gender, class and citizenship in the comparative analysis of welfare state regimes: theoretical and methodological issues’, British Journal of Sociology, vol 44, no 3, pp 501-18. Oliver, M, (1990) The politics of disablement, Basingstoke: Macmillan. Oliver, M. (1991) ‘Disability and participation in the labour market’, in R. Brown and R. Scase (eds) (1991) Poor work – Disadvantage and the division of labour, Milton Keynes: Open University Press. Oliver, M. (1992) ‘Changing the social relations of research production?’, Disability, Handicap and Society, vol 7, no 2, pp 99-114. Oliver, M. (1993b) ‘Societal responses to long-term disability’, in G. Whiteneck et al (eds) Aging with spinal cord injury, NewYork, NY: Demos Publications.

129

Working for a living?

Oliver, M. (1995) ‘Disability, empowerment and the inclusive society’, in G. Zarb (ed) Removing disabling barriers, London: Policy Studies Institute, pp 17-26. Oliver, M. (1996) Understanding disability: From theory to practice, Basingstoke: Macmillan. Oliver, M. and Barnes, C. (1996) Disabled people and society: From exclusion to inclusion, London: Longman. Olsson, S. (1988) ‘Decentralisation and privatisation: strategies against a welfare backlash in Sweden’, in R. Morris (ed) Testing the limits of social welfare, London: Brandeis University Press. Orloff, A. (1993) ‘Gender and the social rights of citizenship: the comparative analysis of gender relations and welfare states’, American Sociological Review, vol 58, pp 303-28. Oyen, E. (ed) (1990) Comparative methodology: Theory and practice in international social research, London: Sage. Palmer, C., Moon, G. with Cox, S. (1997) Discrimination at work:The law on sex, race and disability discrimination, London: Legal Action Group. Parker, G. (1992) With this body: Caring and disability in marriage, Milton Keynes: Open University Press. Parsloe, P. and Stevenson, O. (1993) Community care and empowerment, York: Joseph Rowntree Foundation. Paugam, S. (1996) ‘Poverty and social disqualification: a comparative analysis of cumulative social disadvantage in Europe’, Journal of European Social Policy, vol 6, no 4, pp 287-303. Pfaller, A., Gough, I. and Therborn, G. (eds) (1991) Can the welfare state compete?, London: Macmillan. Pierson, C. (1991) Beyond the welfare state, Cambridge: Polity Press. Prescott-Clarke, P. (1990) Employment and handicap, London: Social and Community Planning Research. Provan, B. et al, (1996) The requirement to co-operate:A report on the operation of the ‘good cause’ provisions, London: Child Support Agency. Rake, K. (1999) Women’s incomes over the lifetime, London: Cabinet Office. Ratzka,A. (1986) Independent living and attendant care in Sweden:A consumer perspective, New York, NY: World Rehabilitation Fund.

130

References

Ratzka,A. (1996) ‘STIL – the Stockholm Co-operative for Independent Living’ (information available at http://www.stil.se). Rees, A. (1995) ‘The promise of social citizenship’, Policy & Politics, vol 23, no 4, pp 313-25. Rimlinger, G.V. (1971) Welfare policy and industrialization in Europe,America and Russia, New York, NY: John Wiley. Roche, M. (1992) Rethinking citizenship, Cambridge: Polity Press. Rock, P. (1988) ‘Independence: what it means to six disabled people living in the community’, Disability, Handicap and Society, vol 3, no 1. Room, G. (1995) Beyond the threshold: The measurement and analysis of social exclusion, Bristol: The Policy Press. Rose, D., Buck, N. and Johnston, R. (1994) ‘The British Household Panel Study: a valuable new resource for geographical research’, Area, vol 26, no 4. Rowlstone, A. (2000) ‘Disability, dependency and the New Deal for Disabled People’, Disability and Society, vol 15, no 3, pp 427-43. Rowlingson, K. and Berthoud, R. (1996) Disability, benefits and employment: An evaluation of Disability Working Allowance, DSS Research Report No 54, London: The Stationery Office. Sadowski, D. and Frick, B. (1992) Die Beschäftingung Schwerbehinderter: Betriebswirtscftftliche Analysen und politische Empfehlung, Schulz-Kirchner Verlag. SAF (Swedish Employer’s Confederation) (1994) Persons with disabilities in companies, Factsheet, November. SAF (Swedish Employer’s Confederation) (1995) Making the labour market a better market, Factsheet, April. Sainsbury, D. (ed) (1994) Gendering welfare states, London: Sage Publications. Sainsbury, D. (1996) Gender, equality and welfare states, Cambridge: Cambridge University Press. Sainsbury, R., Hirst, M. and Lawton, D. (1995) Evaluation of Disability Living Allowance/AA, DSS Research Report No 41, London: HMSO.

131

Working for a living?

Schmidt, M. (1989) ‘Learning from catastrophes – West Germany’s public policy’, in F.G. Castles (ed) The comparative history of public policy, Cambridge: Polity Press, pp 56-99. Schmidt, M. (1993) ‘Gendered labour force participation’, in F.G. Castles (ed) Families of nations, Aldershot: Dartmouth. Scotch, R. (1988) ‘Disability as the basis for a social movement: advocacy and the politics of definition’, Journal of Social Issues, vol 44, pp 159-72. Scott, R. (1969) The making of blind men, New York, NY: Russell Sage. Sen,A. (1983) ‘Poor, relatively speaking’, Oxford Economic Papers, no 335, pp 153-69. Sen, A. (1988) The standard of living, Cambridge: Cambridge University Press. Seyfried, E. (1995) ‘Social enterprises in Germany’, International Journal of Practical Approaches to Disability, vol 19, no 2, pp 20-2. Shakespeare, T. (1992) ‘Defining disability: conflict, confusion or compromise?’, Paper presented at Social Policy Research Unit seminar, University of York, December. Shakespeare,T., Gillespie-Sells, K. and Davies, D. (1996) The sexual politics of disability, London: Cassell. Shaver, S. and Bradshaw, J. (1993) ‘The recognition of wifely labour by welfare states’, Social Policy Research Centre Discussion Paper No 44, Sydney: University of New South Wales, Australia. Simonin, B. (1996) ‘Evaluating European observatories and networks on social policy’, in L. Hantrais and S. Mangen (eds) Cross-national research methods in the social sciences, London: Pinter. Sly, F. (1996) ‘Disability and the labour market’, Labour Market Trends, September, pp 413-24. Smeeding, T., O’Higgins, M. and Rainwater, L. (1990) Poverty, income ineqaulity and income distribution in comparative perspective, London: Harvester Wheatsheaf. Smith, J., Gifford, S. and O’Sullivan, A. (1998) The family background of homeless young people, London: Family Policy Studies Centre. Social Security Advisory Committee (1994) In work – out of work: The role of incentives in the benefits system, Leeds: Benefits Agency.

132

References

Social Security Advisory Committee (1997) Social security provision for disability – A case for change?, London: The Stationery Office. Soydan, H. (1996) ‘Using the vignette method in cross-cultural comparisons’, in L. Hantrais and S. Mangen (eds) Cross-national research methods in the social sciences, London: Pinter. Statistics Sweden (Statistiska centralbyran) (1992) Handikappade 1975-1989, Levnadsforhallanden, report 74, Stockholm: Statistics Sweden. Statistics Sweden (Statistiska centralbyran) (1994) The cost and financing of the social services in Sweden in 1992, Stockholm: Statistics Sweden. Stevenson, O. and Parsloe, P. (1993) Community care and empowerment, York: Joseph Rowntree Foundation. Stone, D. (1984) The disabled state, London: Macmillan. Stuart, O. (1992) ‘Race and disability: what type of double disadvantage?’, Disability, Handicap and Society, vol 7, no 2. Swain, J. et al (1993) Disabling barriers, enabling environments, London: Sage Publications. Swain, P. (1988) A Scandinavian study tour of services for physically handicapped people, Exeter: Exeter Council for Independent Living. Swedish Institute (1997) Factsheets:The health care system in Sweden; Swedish handicap Policy; Social insurance in Sweden, Stockholm: Swedish Institute. Tahlin, M. (1987) ‘Leisure and recreation’, in R. Erikson et al (eds) The Scandinavian model: Welfare states and welfare research, New York, NY: Armonk. Tampke, J. (1981) ‘Bismarck’s social legislation; a genuine breakthrough?’, in W.J. Mommsen (ed) The emergence of the welfare state in Britain and Germany, London: Croom Helm, pp 71-83. Taylor-Gooby, P. (1991) ‘Welfare state regimes and welfare citizenship’, Journal of European Social Policy, vol 1, no 2. Thomas,A. (1992) Working with a disability: Barriers and facilitators, London: Social and Community Planning Research. Thompson, P., Buckle, J. and Lavery, M. (1988) Not the OPCS survey: Being disabled costs more than they said, London: Disability Income Group. Thompson, P., Lavery, M. and Curtice, J. (1990) Short changed by disability, London: Disablement Income Group.

133

Working for a living?

Thornton, P. and Lunt, N. (1995) Employment for disabled people: Social obligation or individual responsibility?, Social Policy Report No 2,York: Social Policy Research Unit, University of York. Thornton, P. and Lunt, N. (1997) Employment policies for disabled people in eighteen countries:A review,York: Social Policy Research Unit, University of York. Thornton, P., Sainsbury, R. and Barnes, H. (1997) Helping disabled people to work: An international survey of partial capacity benefits, London: Social Security Advisory Committee. Titmuss, R. (1958) Essays on the welfare state, London: Allen and Unwin. Townsend, P. (1979) Poverty in the United Kingdom, Harmondsworth: Penguin Books. Townsend, P. (1993) The international analysis of poverty, London: Harvester Wheatsheaf. Townsend, P., Davidson, N. and Whitehead, M. (1988) Inequalities in health, Harmondsworth: Penguin. Trenk-Hinterberger, P. et al (1993) Die Rechte Behinderte Leute und Ihre Angehorigen, Dusseldorf: Bundesarbeitsgemeinschaft Hilfe für Behinderte. Turner, B. (1986) Citizenship and capitalism, London: Allen and Unwin. Twine, F. (1994) Citizenship and social rights, London: Sage Publications. Ungerson, C. (1995) ‘Gender, cash and informal care: European perspectives and dilemmas’, Journal of Social Policy, vol 24, no 1, pp 3152. Ungerson, C. (1997) ‘Give them the money: is cash a route to empowerment?’, Social Policy and Administration, vol 31, no 1, pp 4553. UPIAS (Union of Physically Impaired Against Segregation) (1976) Fundamental principles of disability, London: UPIAS. Verbrugge, N. (1987) ‘Role responsibilities, role burdens and physical health’, in F. Crosby (ed) Spouse, parent, worker, New Haven, NJ: Yale University Press. Voges,W. and Rohwer, G. (1992) ‘Receiving social assistance in Germany: risk and duration’, Journal of European Social Policy, vol 2, no 3, pp 17591. 134

References

Wadensjö, E. (1991) ‘Sweden: partial exit’, in M. Kohli, M. Rein et al (eds) Time for retirement: Comparative studies of early exit from the labour force, Cambridge: Cambridge University Press. Wadensjö, E. (1993) Labour market programmes and part-time work: The Swedish example, Reprint Series No 423, Stockholm: Swedish Institute for Social Research. Wadensjö, E. and Palmer, E. (1996) ‘The concept of work capacity’, Paper for the Third International Research Seminar on ‘Issues in Social Security’, Sigtma, Sweden. Walker, A., Alber, J. and Guillemard, A.M. (1993) Older people in Europe: Social and economic policies. The 1993 Report of the European Observatory on Older People, Brussels: Commission of the European Communities. Warr, P. (1987) Work, unemployment and mental health, Oxford: Oxford University Press. Westerhäll, L. (1996) ‘The rehabilitation of partially disabled workers in Sweden’, Paper prepared for a seminar held in Utrecht, 4-5 November. Wilensky, H. (1975) The welfare state and equality, Berkeley, CA: University of California Press. Wilson, M. (1993) ‘The German welfare state: a conservative regime in crisis’, in A. Cochrane and J. Clarke (eds) Comparing welfare states, London: Sage Publications, pp 141-71. Winkler,A. (1996) ‘Integration of persons with disabilities into the labour market and state intervention: crucial design features and the effectiveness of compulsory employment policy from a German perspective’, Paper prepared for an expert meeting in Utrecht, 4-5 November. Wood, P. (1981) International classification of impairments, disabilities and handicaps, Geneva: World Health Organisation. Yelin, E. and Cisternas, M. (1996) ‘The contemporary labour market and the employment prospects of persons with disabilities’, in J. Mashaw, V. Reno, R. Burkhauser and M. Barques (eds) Disability, work and cash benefits, Michigan: W.E. Upjohn Institute for Employment Research. Zarb, G. (1992) ‘On the road to Damascus: first steps towards changing the relations of disability research production’, Disability Handicap and Society, vol 7, no 2, pp 125-38.

135

Working for a living?

Zarb, G. (ed) (1995) Removing disabling barriers, London: Policy Studies Institute. Zarb, G. (1997) ‘Researching disabling barriers’, in C. Barnes, and G. Mercer (eds) Doing disability research, Leeds: Disability Press. Zarb, G. and Oliver, M. (1993) Ageing with a disability:What do they expect after all these years?, London: University of Greenwich. Zarb, G. and Nadash, P. (1994) Cashing in on independence: Comparing the costs and benefits of cash and services, Derby: British Council of Disabled People/Policy Studies Institute. Zola, I. (1982a) ‘Social and cultural disincentives to independent living’, Archive of Physical Medical Rehabilitation, vol 63, pp 394-7. Zola, I. (1982b) Missing pieces, Philadelphia: Temple University Press.

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Appendix: Methods used for the research As discussed earlier, the three countries selected for the study were chosen as illustrations of different types of welfare state regimes, and because of contrasting attitudes and policies towards the employment of disabled people. A variety of different research methods was used, in a strategy of ‘triangulation’ as advocated by Denzin (1978), and in a comparative context by Simonin (1996). These included secondary analysis of survey data, reviews of published material, and discussions with national experts on policy.

Secondary analysis of survey data Secondary analysis of data provides a cost-effective strategy for obtaining a broad overview of the outcomes of policy despite its well-known limitations in conceptualising the experience of disabled people (Abberley, 1991, 1992). It was decided to use three large data sets in order to analyse the employment, living standards and social and political participation of disabled people across the three countries and relative to non-disabled people in each country. These are the German SocioEconomic Panel, the British Household Panel Survey and the Swedish Level of Living Survey. The surveys selected were each panel studies, but they have been used cross-sectionally to provide an analysis for 1991. This year was chosen as it is the only one for which data is available for all three surveys. These data sets were chosen in part because of the absence of a suitable harmonised single data set for comparative analysis. The Luxembourg Income Study was considered as a data source, but it proved unsuitable, because a disability indicator was not available for all the countries, and because of a lack of information on economic and social participation, as opposed to income data. The three surveys are, of course, not comparable in the same way as a harmonised data set. Fundamentally, each survey uses a different definition of disability. Definitions of basic indicators such as income, household composition, and employment are all different. More culturally specific concepts such as well-being, health, and social and political life, show, if anything, even more divergence. However, the different definitions are described in order to achieve transparency about what is being compared, and

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they have functional equivalence in that they are able to provide comparisons of the situation of disabled relative to non-disabled people within each country (see Figure 1). What is more, by a critical analysis of the instruments which are used to measure these concepts, it is possible to improve our understanding of national differences in the concept of disability, and of the aims underlying welfare measures in each country (Glover, 1996).

About the three surveys The German Socio-Economic Panel (GSOEP) The GSOEP is a panel survey, started in 1984, and expanded from 1990 to cover both the West and former East Germany. The GSOEP has a complex file structure, with data on an individual divided between several files, including spell data for mapping movements in and out of work, biographical data and household information. In addition, foreign guest workers are over sampled in order to permit independent analysis of their situation. Information is collected on six broad topic areas: • • • • • •

demography and population; labour market and unemployment; income, taxation and social security; housing; health; education and training.

In addition, topical modules are included in the questions for particular years, covering issues such as working life history, time use, and care for children. The majority of questions are standardised ‘closed’ questions, with a small number of ‘open’ questions which can be analysed qualitatively. The first wave of the panel contained 12,245 individuals from 5,921 households. The 8th wave (1991) contains information on 12,941 individuals. Removing those aged under 16 or over 65 and cases where information on disability status was missing reduced the sample size to 7,807. There were two possible disability indicators. The first asks whether an individual suffers from any chronic illness. However, as 25% of the sample had answered in the affirmative, this was clearly too broadly defined to be of use. The other variable is a measure of whether the individual has an assessed occupational disability. Because not all of those eligible will have sought formal assessment, this is an

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Appendix: Methods used for the research

underestimate of the incidence of disability in the population as a whole; 565 people, or 8.4% of the sample, are disabled according to this measure. Figure 1:

Indicator

Availability/comparability

Personal characteristics Age Gender Number of adults and children in household Marital/partnership status

available in all three surveys, no problems of comparability

Highest educational qualification Disability

available in all three surveys, not fully comparable across countries

Severity of disability

available for Sweden and Germany, but not fully comparable

General health status

broadly comparable variables, for Sweden and Britain only

Employment Current labour market status Hours worked Desired hours of work Never worked Attitudes to work Job satisfaction Income Earnings of respondent Earnings of partner Total individual income Total household income Total income from benefits

available in all three surveys, minor problems of comparability available in all three surveys, comparable in broad terms available in all three surveys, not fully comparable across countries

Non-monetary indicators of living standards Use of car Use of telephone

no problems of comparability, but not available in all three surveys

Current satisfaction with life Anticipated/past satisfaction with life

available in all three surveys, comparable in broad terms

Financial stress

broadly comparable variables, for Sweden and Britain only

Social and political participation Social support Political interest

available in all three surveys, not fully comparable across countries

Trades Union membership

no problems of comparability, but not available in all three surveys

Membership of organisations Psychological well-being

broadly comparable variables, for Sweden and Britain only

Social activities

available for Sweden only

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The Swedish Level of Living Survey (ULF) The 1991 Level of Living Survey is a replication of three surveys carried out in 1968, 1974 and 1981. The surveys have a panel design, and many respondents have been interviewed in all four waves. The survey for 1991 is based on personal interviews with around 6,000 people aged between 18 and 75 years. Because the analysis was concerned with the population of working age, people over the age of 65 were removed, leaving a sample of 4,588. Two different disability indicators were constructed. One includes people who cannot walk, people who cannot climb stairs and people who cannot use taps. This is an underestimate of disability, and includes 7.7% of the sample, but is a useful proxy for severe disability, as there is no measure of severity within the data. The second disability indicator includes all those in the first and additionally those who have sight, hearing, or mental health problems which they describe as severe, and those who have a lasting injury or disability resulting from an accident which is described as severe. The incidence of disability among the working-age population is 13.1% when measured by this indicator.

The British Household Panel Survey (BHPS) The British Household Panel was launched in 1990, for an initial period of eight years, following extensive consultation with a range of potential data users in the academic and policy making community. The randomly selected panel is re-interviewed every year. The bulk of the questionnaire (around 80%) is the same from year to year, while the remainder comprises some questions which are asked every few years and others which are asked once only (see Rose et al, 1994 for a brief introduction). Six broad topic areas are represented in the questionnaire: • • • • • •

140

household organisation, including demographic information, time use and intra-household finances; labour market participation; income and wealth; housing; health; socioeconomic values, such as beliefs about whether or not women with young children should work.

Appendix: Methods used for the research

The British Household Panel Study for 1991 has details of 10,264 individuals in 5,538 households. Of these individuals 1,419 have a disability, defined as a health condition which limits daily activities. 7,814 of the population are of working age, and of these 733 (9.4%) are people who report that they have a limiting long-term illness (the disability indicator). More women than men are disabled; women make up 54.8% of the disabled population in the UK, as compared to 50.4% of the population as a whole. The disabled group is also older, as is to be expected, as the incidence of illness and impairment increases with age.

Methods of analysis The bulk of the analysis compares the situation of disabled and nondisabled people using cross-tabulations of categorical data. Analysis of variance and T-tests were also carried out to explore differences in means for cardinal data on income and scores on a range of measures connected with well-being, social and political participation. Discriminant analysis was used to explore the importance of various factors influencing employment rates of disabled people, levels of social participation, and the likelihood of a given individual being employed or in a low-income group. This is a statistical technique which combines and weights several factors with an existing value in predicting group membership in order to improve the accuracy of prediction. Scores range between 50% (if there is no improvement upon simple random probability) and 100% (if total accuracy of group membership were achieved). Originally developed by biologists who needed to be able to distinguish between species with very similar characteristics, the discriminant function uses scores on several measurements to emphasise the differences between two groups, by systematically reducing areas of overlap (Howells, 1978), it has subsequently been adopted as a standard technique. Various aspects of the working situation were analysed. All three surveys had data on employment status, earnings, hours worked and satisfaction levels. The Swedish data also provided data on conditions within the workplace, including whether the individual was permitted to receive a visitor at work, the availability of flexible working hours, and so on, which were combined to create a flexibility scale. Similar scales were constructed to measure the demands of work (including physical and mental stresses) and the work environment (exposure to toxins and so on). Living standards were explored using both income data and nonmonetary indicators such as subjective indicators of financial situation

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and the possession of consumer durables. The British data was richest in non-monetary indicators, whereas the German data had better income information than either of the other two surveys. Social participation was measured by a number of indicators. The Swedish data provided a list of 18 leisure activities. These measures were subsequently modified to create a scale eliminating physical activities (which are less likely to be pursued by disabled people) in order to make more meaningful comparisons. The British data provided somewhat less useful material on membership of organisations, while there was little or no information on social activities in the German data. Both the British and the Swedish surveys provided measures of well-being and social support which were used to compare the quality of life for disabled and non-disabled men and women in different income and employment situations. All three surveys provided information of the level of interest in politics, although only in Sweden were respondents asked about their voting behaviour; interest has therefore been used as a proxy for activity as far as politics is concerned.

The use of ‘vignettes’ to compare outcomes It was decided to use ‘vignettes’ for the comparison of policy outcomes, a technique pioneered by Finch (1987, 1989) and Finch and Mason (1993). Finch defines a vignette as a short story “about hypothetical characters in specified circumstances, to which the interviewee is invited to respond” (Finch, 1987, p 105). Vignettes are generated from a range of sources, including previous research findings and real life case histories (Hughes, 1998). Such vignettes are used increasingly in qualitative research, particularly where sensitive issues are being discussed. Examples include Hughes’ (1998) study of injecting drug behaviours, comparative research exploring the nature of obligations to family members of different situations (Millar and Warman, 1996) and in a study of the reasons why young people in the UK are asked to leave the parental home (Smith et al, 1998). They have also been used to examine the logic of administrative decision making, for instance in a study of child support officers in the UK (Provan et al, 1996) and in a comparison of social work practice in Sweden and the UK (Soydan, 1996). Vignettes have also been used, to provide illustrations of typical outcomes, in a study of the lifetime impact of motherhood on women’s earnings in the UK (Joshi et al, 1996). In this study they were used to examine the factors taken into account in administrative decision making, and to illustrate the overall outcomes of employment, income and personal assistance policies.

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In comparative research, vignettes are particularly well-suited to identifying aspects of difference which may be overlooked by a focus on statistical indicators (Castles, 1993), and are extremely effective in making explicit assumptions underlying administrative practices which would otherwise remain concealed, as a recent study of social workers in Sweden and the UK has revealed (Soydan, 1996). Three typical case studies were constructed, based on varying degrees of disability occurring at different stages of the life cycle. These ‘vignettes’ were then used in face to face interviews and telephone discussions and as a framework for analysing documentary material. They proved effective in capturing trans-societal differences in response to a common problem, since the scenarios described occur all the countries in the study, and were readily recognised as situations which officials and advocates encounter in their daily work practice. The cases considered were as follows:

Case 1 A young person in their early 20s, disabled since birth, with moderate to high personal assistance needs, living with parents, and with no experience of employment. Issues for discussion and comparison included: • • • • •

the level of benefit received compared with someone with previous work experience; assumptions made by social welfare and benefit processionals about the willingness or ability of parents to provide personal assistance; the prospects of obtaining work or training; the prospects of being able to establish an independent household; the financial implications of remaining with parents as opposed to living alone.

Case 2 A man with two dependent children and a non-working partner, who is spinally injured in his late 30s and has personal assistance needs. Issues for discussion and comparison included: • •

prospects of retaining or obtaining employment; assumptions made about the caring role of his partner by social welfare or benefit professionals;

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• •

financial incentives for either the disabled person or their partner to work; how the situation would differ if the non-working partner had become disabled.

Case 3 An industrial worker in his fifties, with a chronic long-term illness and no personal assistance needs who is living with a partner and has no dependent children. Issues for discussion and comparison included: • • • • • •

prospects of remaining in work or obtaining alternative work; benefits compared with those available to a younger disabled person; incentives to stay at work or leave; incentives to take on part-time work or lower-paid work as alternative to current job; incentives or disincentives for partner to work if disabled person leaves work; would the situation be different if it were an older woman becoming disabled?

The trajectories of disabled people in Britain were the most familiar, from a wide body of research material, as well as from previous work experience in the field of welfare rights. It was necessary to visit Sweden, as it was a condition of obtaining access to survey data that analysis was carried out within the country, and this provided the opportunity to meet with a number of stakeholders, including representatives of the social insurance office as well as a number of disability organisations. The majority of those employed in disability organisations had personal experience of disability and the operation of the social security and social services legislation, as well as being able to offer a professional overview. The aim, however, was not to access individual experience but to act as a corrective to any ‘naïve’ tendency in the understanding of policy (Bradshaw, 1993) by cross-checking the notional application of policy against its operation in practice. Unfortunately, financial constraints precluded a parallel visit to Germany, and it was necessary to rely mainly on published sources, although there were some possibilities of discussion with the national informants employed on a related research project (Thornton et al, 1997).

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