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Back to Bedlam WHAT KIND OF FUTURE FACES PEOPLE WITH A LEARNING DISABILITY? by Robin Jackson Back to Bedlam WHAT KIND OF FUTURE FACES PEOPLE WITH A LEARNING DISABILITY? by Robin Jackson Published by the Centre for Welfare Reform Publishing Information Back to Bedlam © Robin Jackson 2017 First published July 2017 Back to Bedlam is published by the Centre for Welfare Reform If you copy and reuse any part of the material in this report then you must always cite both the author and the publisher and, wherever possible, provide a direct link to the Centre for Welfare Reform's website. www.centreforwelfarereform.org Designed by Henry Iles: www.henryiles.com 91 pp ISBN download: 978-1-907790-91-1 CONTENTS SUMMARY . 5 PROLOGUE . 6 1 . LOW PROFILE . 9 2 . GOVERNMENT ATTITUDES . 12 3 . THE GOVERNMENT’S RESPONSE TO UN REPORT . 17 4 . THE FUTURE OF SOCIAL CARE . 22 5 . THE CQC: A FAILED ENTERPRISE . 28 6 . THE DECLINING IMPACT OF PRESSURE GROUPS . 33 7 . EMPLOYMENT AND PEOPLE WITH A LEARNING DISABILITY . 41 8 . PROBLEMS IN UNDERTAKING INDEPENDENT RESEARCH . 47 9 . THE IMPACT OF TECHNOLOGY . 52 10 . GROWING PREJUDICE . 57 11 . A RETURN TO INSTITUTIONS? . 60 12 . THE CASE FOR INTENTIONAL SUPPORTIVE COMMUNITIES . 67 EPILOGUE . 76 Bibliography . 78 About the Author . 86 SUMMARY The claim is made that successive governments in the UK have ignored people with a learning disability because this population is perceived to be too small and insignificant to warrant government interest and action . It is argued that the attitude of successive governments towards people with a learning disability has been not only unnecessarily cruel but also too frequently characterised by administrative maladroitness and political ineptitude . It will be demonstrated that the rights of people with a learning disability in the UK have been either ignored or violated by successive governments . The last government’s assertion that the UK is a world leader in disability rights and equality is challenged . The future of social care and the reasons for the growing number of care home closures are examined and some of the implications of local authority cuts in social care provision are highlighted . Reasons for the declining influence of the major disability charities and the consequences for people with a learning disability are examined . 5 Ways in which successive governments have succeeded in muzzling the voice of the larger national charities and ‘independent’ advocacy programmes are identified . Some of the negative consequences of state control in the field of research are described . The impact of technology on the provision of services for people with a learning disability is examined . The effect of escalating levels of prejudice and discrimination involving people with a learning disability is discussed . The question is posed as to whether we are witnessing the return of institutionalization of people with a learning disability . Attention is drawn to the detrimental effect of successive governments’ practice of outsourcing social care provision for people with a disability . A REPORT FROM THE CENTRE FOR WELFARE REFORM BACK TO BEDLAM | PROLOGUE PROLOGUE Over a period of fifty years I have been professionally and personally involved in the field of learning disability – as a school principal, academic/researcher, advocate, consultant – and last but not least – a parent . My purpose in writing this paper is prompted by a fear that learning disability is no longer registering on the national radar as the number of people with a learning disability is seen by government as too small to merit attention . The recent and highly critical UN report on the situation facing people with a disability in the UK underlines that lack of governmental interest and concern . The record of the major disability charities in the UK representing people with a disability and their families is woeful but predictable given the extent to which they are financially dependent on state support and it has been left to grassroots organisations (e.g. Disabled People against Cuts) to speak up for those with a disability. If one focuses on the question of social care provision for people with a learning disability, it is clear the situation is fast deteriorating. The abandonment in the past two decades of this sector to the private (for profit) sector has proved catastrophic. It is known 6 that the major providers in this sector are experiencing acute financial difficulties and that many smaller providers are being forced to abandon the sector. The likelihood of a further significant contraction is inevitable. The regulatory body - the Care Quality Commission - has demonstrated that it is not fit for purpose: in particular its consistent failure to follow up on those care homes which have failed to meet satisfactory levels of performance. Many of the problems facing social care anticipated by Dame Denise Platt, formerly Chair for Social Care Inspection, eight years ago have been realised. The fact that a large number of social care providers have been paying staff below the national minimum wage has diminished the chances of recruiting well-qualified and highly motivated staff and increased the probability of not only high staff turnover and poor quality service but also a rise in the maltreatment and abuse of residents. The implications of Brexit, too, cannot be ignored given the significant proportion of staff in social care settings who are currently drawn from Eastern Europe. If this source is cut off, from where will staff be recruited? A further probable consequence of what is likely to be a hard Brexit is that the UK will have even fewer financial resources on which to draw to assist the beleaguered social care sector. If some of the large for-profit organisations currently providing social care ‘go bust’ or decide that the social care sector no longer offers them a worthwhile investment, what then? Where will those people with a learning disability formerly resident in homes run by these organisations go given that local authorities have largely abandoned this sector? Some local authorities – like Rochdale – are reviewing the policy of offering tenancies to people with a learning disability in supported housing in the community. Such local authorities argue that they are being forced to make savings: one such saving A REPORT FROM THE CENTRE FOR WELFARE REFORM BACK TO BEDLAM | PROLOGUE being achieved by transferring residents to facilities catering for larger numbers. Some commentators have represented this trend as a return to institutionalisation. The claim that we may be returning to a period of institutionalisation cannot be lightly dismissed. The last two decades have witnessed the closure of day centres, adult training centres, sheltered employment schemes (e.g. Remploy) and the growth of chronically understaffed care settings where opportunities for residents to participate in community activities are limited. Another factor that cannot be ignored is the growing impact of artificial intelligence and robotics which will eliminate a wide range of unskilled, semi-skilled and skilled forms of employment so that competition for those jobs remaining will be intensified. In such a situation job opportunities for people with a learning disability are likely to be negligible to non-existent. One reason that we are currently in such a dire situation is because over the past three decades we have viewed educational, health and social care provision for people with a learning disability through too narrow a prism – one constrained by a limited perception of the meaning of inclusion and community. My fear is that the current pursuit of the policy of austerity when combined with the likely negative consequences of Brexit will set in train an irreversible process that will adversely affect all people with a learning disability and their families. If something is going to be done to reverse this process then it needs to be done very soon as time is fast running out. 7 A REPORT FROM THE CENTRE FOR WELFARE REFORM BACK TO BEDLAM | 1. LOW PROFILE 1. LOW PROFILE It has been argued that people with a learning disability – those with significant limitations in both functioning and adaptive behaviour – have become an invisible population in the UK . The Chief Executive of the National Development Team for Inclusion in the UK recently observed that people with a learning disability have achieved little or no profile for the last 20 years (Greig, 2015) . He highlighted a conversation that he had had with a senior government official who informed him that any attempt to seek radical improvements in provision for people with a learning disability would fail because the numbers were too insignificant to warrant government action . But what is an insignificant number? It is estimated that there are at least 1 .2 million people with a learning disability in England (Emerson et al, 2012) . When one adds to that total those directly involved in the support of people with a learning disability, including family members and care staff, that figure is significantly increased . 9 In a recent survey conducted by Mencap it was found that parents who had children with a learning disability believed that mainstream schools were failing to help their children reach their full potential. According to this survey 1,000 parents found mainstream schools were failing children with a learning disability – with 81 per cent of parents saying they were not confident their child's school was helping them do their best. Nearly two-thirds of parents (65 per cent) were convinced their children were receiving a poorer education than those without special needs. A similar number (64 per cent) indicated that their child had been taken out of class or activities because of their disability. Jan Tregelles, Mencap’s chief executive, concluded: "parents feel the education service is woefully ill-prepared to properly support children and young people with a learning disability to reach their full potential" (Garner, 2014).

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