From ‘Dependency’ to ‘Self Directed Support’? A UK Perspective of Disability, Welfare and Work Since the 1940s

Simon Prideaux

School of Sociology and Social Policy

University of Leeds, UK

Overview

“…A great deal of the responsibility for the persistence of institutional discrimination against disabled people rests with the succession of British governments since 1945. While there is a growing consensus throughout the democratic world that disabled people have the same basic human rights as non disabled people, and that it is the responsibility of governments to ensure that they are able to secure a standard of living comparable to that of their fellow citizens, this has not occurred in the United Kingdom” (Barnes, 1992:13)

Institutional Discrimination in the UK During the1940s

  • During the 1940s, official policy with regard to disabled people moved away from the extremes of earlier epochs in favour of a more overtly paternalistic approach
  • Can be explained with reference to a number of factors—the humanitarian influence of the Victorian philanthropists, the general concern felt toward disabled ex-servicemen during and after two world wars, the changing political climate, and the prospect of a buoyant economy
  • Resulted in a flurry of legislation:
  1. Disabled Persons (Employment) Act of 1944 attempted to ensure that all disabled people were provided with a variety of rehabilitation services and vocational training courses
  2. The 1944 Education Act stated that every child should receive education suitable for her/his age, ability and aptitude, and obliged local authorities (LAs) to provide special educational treatment for those thought to need it
  3. The National Health Service Act 1948 provided for the acute medical needs of disabled people, and made it possible for LA departments to provide any medical aids necessary to enable disabled people to live in their own homes
  4. The National Assistance Act of 1948 made some provision for meeting the financial needs of disabled people, and mandated local authorities to provide residential facilities and services for people 'who are substantially and permanently handicapped by illness, injury or congenital deformity' (Barnes, 1991 quoting Oliver, 1983)

UK Institutional Discrimination (the 1950s – 1980s) [1]

  • Since the late 1950s there has been a concerted attempt by successive governments to reduce the numbers of people living in segregated institutions by expanding community-based services
  • The Report of the Royal Commission on Mental Deficiency of 1954-7 considered the problems arising from outdated mental hospitals and the stigma associated with in-patient treatment
  • The shift toward community-based services took a more decisive turn in 1961 when the Government announced its decision to halve the number of beds in mental hospitals (economics?)
  • In 1962 the Ministry of Health published A Hospital Plan. This was followed one year later by Health and Welfare: The Development of Community Care, generally referred to as The Community Care Blue Book
  • Both provided a sketchy outline of plans for community-based services, including proposals for increases in the numbers of general practitioners, home helps, district nurses, health visitors, sheltered housing schemes and sheltered workshops
  • Provision was intended for four specific groups, namely mothers and children, the elderly, 'the mentally disordered' and the 'physically handicapped' (Jones et al., 1983)

UK Institutional Discrimination (the 1950s – 1980s) [2]

  • Around this time a number of critical investigations into institutional life and a spate of sensational public expositions by the national press of the cruelty and harsh treatment manifest in institutions for 'the elderly' and 'the mentally ill‘ undermined public and professional confidence in the services provided in long-stay hospitals and similar establishments
  • The Government commissioned The Seebohm Report 1968 which is generally considered a watershed in the development of community-based services for disabled people
  • Among its principal conclusions were the recommendations that local authorities should accumulate data relating to the nature and size of the problems associated with disability; and that they should develop and/or expand services in conjunction with those already provided by the health service and the voluntary sector
  • These recommendations were subsequently incorporated into the Local Authority Act 1970 and the Chronically Sick and Disabled Persons Act 1970
  • The establishment of social service departments in their present form quickly followed
  • In conjunction with provision for the other main dependent groups, the new departments were responsible for social services for disabled people. These included the provision of social workers, occupational therapists, residential and day centre facilities, holidays, meals on wheels, respite services, and disability aids and adaptations

UK Institutional Discrimination: A Summary

  • Clearly the positive effects of this expansion were that the majority of disabled people had more access to relatively more services and were less likely to be consigned into a segregated residential setting
  • On the other hand, the organisation of these services were steeped in a 'culture of dependence' as they were predicated upon the assumption that individuals with impairments are people who are helpless and unable to make their own decisions and unable to choose for themselves the aids and services they need (Shearer, 1981)
  • This was largely due to the fact that the majority of professionals and service-providers adhered either explicitly or implicitly to the traditional individualistic medically-influenced definitions of disability (Oliver, 1983; Sutherland, 1981; Davis 1986)
  • To make matters worse, disability surveys carried out in 1971 by Harris for the Office of Population Censuses and Surveys and Wood in 1981 for the WHO tended to classify disability in similar ways to medical classifications of disease
  • Woods work (known as the International Classification of Impairment, Disability and Handicap) conserved the notion of impairment as abnormality in function, disability as not being able to perform an activity considered normal for a human being, and handicap as the inability to perform a ‘normal’ social role (Oliver, 1990)
  • This model clearly assumed that disability and handicap are caused by psychological or physiological abnormality or impairment, and therefore the impairment is the primary focus of attention

UK Policy Reforms Since the 1990s

  • In the face of institutional discrimination and under the auspices of the social model, disabled people have increasingly looked to assume control their own lives
  • Campaigns around independent living and right to meaningful paid work have helped empower and enable disabled people to assume increased responsibility for their own welfare
  • To some extent, changes in welfare policy since the 1990s has helped to facilitate this process
  • The changes during this period occurred in 2 significant areas:
  1. Social Security Benefits
  2. Community Care
  • New Labour have been significant architects of benefit changes and have tended to use a ‘carrot’ and ‘stick’ approach toward claimants of social security
  • Benefit enhancements are used as a ‘carrot’ to ease the transition from welfare into work (eg. tax credits are given to disabled people who go to work in the paid labour market)
  • Reductions in eligibility to benefits are used as the ‘stick’ to deter those choosing not to work (eg. people who fail the capability assessment are deemed capable of work and excluded from entitlement to benefit)

Disabled People and Community Care: A Move Forward?

  • Community care policies of today have been fashioned by a range of changes and concerns that emerged since the 1980s
  • Basic idea behind community care is that older and/or disabled people who require ‘care’ should be supported in their own homes whenever possible
  • In many cases this translates into familial carers (often but not exclusively women) caring for other members of their family

…1990s, however saw more significant legislative change

Significant Community Care Legislation 1990 – 2001

1990 The NHS and Community Care Act: aims of the act were to promote/prioritise the option of people being cared for in their own homes and the enhancement of consumer choice; created an internal (quasi-) market system of social services; LAs required to act mainly as purchasers of services provided by a range of other private or voluntary organisations; LAs required to draw up care plans that were based on ‘client/needs-led’ assessments

1995 Carer’s (Recognition and Services) Act: ‘carers’ who provide ‘care on a regular basis’ to a person who has been, or will be assessed for community care services are entitled to an assessment of their own situation; LAs have to take into account the results of the ‘carer’s’ assessment when making decisions about services to be provided

1996 Community Care Direct Payments Act: allows direct payments to be made to a disabled person so that they may purchase a package of ‘care’ from a range of providers; LAs have a choice of providing this option rather than a duty to provide it

2001 Health and Social Care Act: extends the approach of the 1996 Act; disabled people aged 16-18 are eligible to apply for direct payments as are persons with parental responsibility for a disabled child

(Source Dwyer, 2004: 122)

Significant Community Care Legislation 1990 – 2001 (Continued)

  • The 1990 NHS and Community Care Act sought to rationalise the management of care; LA social services were charged with assessing and providing a package of ‘care’ tailored to the needs of individual clients; the creation of an internal market was, theoretically to promote greater choice; in reality many needs went unmet due to budgetary constraints and the ability of many disabled people to exercise any consumer choice was virtually non-existent (as those on welfare benefits had to take what they were given by local social services)
  • The 1995 Carer’s (Recognition and Services) Act placed the needs of the ‘carer’ at the centre of community care policy; potential for a conflict between the rights agendas of both disabled people and those of ‘carers’; the very notion of ‘care’ could enhance the negative view of a person being ‘cared’ for as a ‘dependent’; tendency for community care to favour the language and approach of the medical model of disability in which disabled people are seen as ‘deserving’ but rather unfortunate recipients of support
  • The 1996 Community Care Direct Payments Act can, in many ways, be seen as an outcome of sustained campaigns by disabled people for empowerment and increased control over their own lives; yet LAs are not duty bound to provide direct payments (have the option if requested); the provision of direct payments is still reliant on professional judgements; requirement that a person ‘possesses the mental capacity’ to manage direct payments can also rule out individuals; nonetheless direct payments do and have help facilitate independent living through the employment of personal assistants
  • The 2001 Health and Social Care Act further extended the scope of this approach

Assessing/Accessing Direct Payments

  • To access DPs or IBs a disabled person must be assessed by the local council as needing social ‘care’ (or support) services
  • Local councils have to use an eligibility framework based on meeting the needs required to achieve and maintain the independence of an individual over time
  • Age, gender, ethnic group, religion, impairments “or similar difficulties, personal relationships, location, living and caring arrangements, and similar factors …may need to be taken into account” (DoH, 2002: 4)
  • Eligibility is graded into the following four bands: critical, substantial, moderate and low
  • Funding is made available in respect of support services; offered to any older or disabled person aged 16 or over (including those with short as well as long term needs) or to people with parental responsibility for disabled children and to ‘carers’ aged 16 or over
  • Councils must tell people if they can get DPs, BUT the local council has a responsibility to secure best value and is not compelled to award DPs
  • Payments can only be made with the consent of the person involved
  • Individuals should be given the help they need to manage their support; applies equally to the process of securing the services a disabled person wants to purchase and in dealing with actual finances and staffing issues

The Dichotomy of Direct Payments

  • On the one hand, within the guidelines for implementation of DPs there appears to be an implicit recognition that the recipient of such provision must become an ‘active’ employer whether or not they are represented by their nominees or advocates
  • This objective sits well with the disabled peoples’ movement’s emphasis on ‘choices and rights’
  • A growing number of disabled people in the UK are becoming employers of PAs
  • Adds a new dimension to what is meant by ‘work’ and employment which is not sufficiently acknowledged in both policy and theoretical terms
  • On the other hand, entitlement to funding is firmly tied to eligibility for, and receipt of, social support services
  • Conjures up a contrasting image of ‘passivity’ that tends to act against the central aims and objectives of user directed support which are to promote independent living
  • Moreover, official attempts to capture the costs and benefits of individual user led services tend to adopt a narrow economic view that takes little account of the wider benefits of these schemes
  • The official position is that ‘…local authorities retain a duty to ensure that these funds are properly accounted for and that the quality of support obtained through them is appropriate to meet users’ needs’ (Audit Commission, 2006: 9)
  • As a consequence, the fact that users who run DP type schemes must build on or acquire work-related skills to help recruit, manage and supervisePAs is overlooked (even though this means DP users are working)
  • Likewise, such a stance ignores the possibility that PA users, when viewed as independent consumers, contribute in various ways to the economyof the family and thelocal and national environment

The Challenge to UK Research and Social Policy

Research and social policies should:

  • Challenge the traditional, ‘welfarist’ assumptions that characterise disabled people as ‘benefit claimants’
  • Counter current understandings of social inclusion narrowly based on full participation in the PLM
  • Recognise the variety of skills that disabled people must acquire when operating user led services and employing professional ‘carers’, ‘care attendants’ or PAs
  • Explore the range new skills acquired by PAs when supporting disabled service users in both the home and in the work environment (where the employment of PAs has provided the opportunity for a disabled person to work in the paid labour market)
  • Go beyond the service users and their PAs to include the role of informal, unpaid ‘carers’ who may be relieved of their support roles and thus enabled to secure employment in the paid work place
  • Examine the increased employment opportunities for allconcerned and incorporate the potential tax revenues that may accrue from such activities both locally and nationally must be accounted for
  • Reconfigure the notion of ‘work’ in a way that completely acknowledges the wider social and economic contributions of disabled people (see also Barnes, 2005)

Final Word

  • Disabled people who employ PAs under self operated support schemes are employers in the same sense as any other
  • As such they are operating as small businesses and are incorrectly stigmatised as ‘benefit recipients’
  • Since user led support systems for disabled people are locally administered, it is a logical progression to enquire whether central administration of this state funding may be more cost effective for HM Treasury
  • Also logical to question whether such provision should continue to be administered by the Department of Health, or be administered instead by the Department for Business, Enterprise and Regulatory Reform
  • Quite simply, it is our contention that DP type schemes represent the first step toward a re-conceptualisation of ‘work’ that will facilitate a new and more pertinent understanding of the activities and efforts undertaken by disabled people
  • All of which has particular implications for both disabled and non-disabled people across the world and the on going struggle for a more equitable and just society (Barnes and Mercer 2009)

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