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Joint Committee On Human Rights Seventh Report

2 ADULTS WITH LEARNING DISABILITIES: THE KEY ISSUES

Human rights abuses are going on every day in our communities suffered by people with learning difficulties and it is time something was done about it.

Andrew Lee, Director, People First (Self-Advocacy)[10]

16. There have been marked improvements in the lives and circumstances of adults with learning disabilities in the 30 years between the 1971 White Paper, Better services for the mentally handicapped,[11] and its successor in England, Valuing People.[12] As Ivan Lewis, MP, Minister of State for Care Services, reminded us:

17. As a result, many fewer people now live in long stay institutions, segregated away from the rest of society. Many more live in ordinary housing in the community. A minority now have paid jobs, some at a senior level including, for example, the National Co-Director of Learning Disabilities at the Department of Health.[14] Noticeable too is the number of people with learning disabilities who are active in self advocacy groups, speaking their views and getting their voices heard, including at inquiries of this kind, something that was unheard of 30 years ago.

18. But this picture of positive change has been tarnished recently by a string of reports and inquiries which have revealed a darker, and more shocking, side to life for some adults with learning disabilities in the 21st century.

Abuse and neglect

A student with cerebral palsy and learning difficulties at one of Scope's residential schools was recently admitted to hospital for 3 days during the school holidays. The student returned directly to the school from hospital and when staff collected him it was noticeable that he had lost a significant amount of weight. The student stated that he had not been given any food to eat during his 3 day stay. When challenged the hospital responded by stating that they did not know how to feed him.

Scope[15]

19. In July 2006 the Healthcare Commission (HCC) and the Commission for Social Care Inspection (CSCI) published a joint report following their investigation of abuse of people with learning disabilities in the care of Cornwall Partnership NHS Trust.[16] The investigation had been prompted by concerns on the part of East Cornwall Mencap Society. The report described many years of abusive practices at the trust including physical, emotional, environmental and financial abuse and the failure of senior trust executives to tackle it. The investigation team found an over-reliance on medication to control behaviour, as well as illegal and prolonged use of restraint. For example, one person spent 16 hours a day tied to a bed or wheelchair. Institutional abuse was widespread. The report spoke of "whole system failure. The mechanisms that should have protected people living in the trust's services failed."[17]

20. In January 2007 the Healthcare Commission published a report following its investigation of learning disability services provided by Sutton and Merton Primary Care Trust.[18] The investigation was undertaken at the request of the Trust's Chief Executive, following a number of serious incidents including allegations of physical and sexual abuse. The report described outmoded, institutionalised, care which had led to the neglect of people with learning disabilities at the Trust, and generally impoverished and unsatisfactory environments, with lack of space compromising people's privacy and dignity. The inappropriate use of restraint was again identified as a serious matter of concern. Institutional abuse was reported to be prevalent in most parts of the service:

21. In the wake of the Cornwall report, the Healthcare Commission embarked on the first audit of NHS and independent specialist inpatient healthcare services for people with learning disabilities in England, in order to identify problems in the sector as a whole, as well as examples of best practice ("the Healthcare Commission Audit"). The report, published in December 2007, found that most services for people with learning disabilities provided poor standards of care, with significant institutional failings depriving people of their human rights and dignity in many instances.[20] Services operated below the radar of the healthcare system, with poor leadership, poor training and no framework to measure the performance of services. People were living in poor physical environments, with few choices in how they lived their lives, and isolated from their communities. While the Commission did not find evidence of physical abuse in any service, it did find that insufficient attention was paid to safeguarding vulnerable people across all aspects of their care.

Failures in healthcare

Sara's parents noticed she was showing signs of distress, crying and falling over more frequently. They took her to hospital to investigate what was wrong, but no investigations took place. Sara kept holding her head and was clearly in serious distress, but was only given paracetamol to manage her pain.

Ten days later Sara was screaming in pain and suffered a major seizure. A brain scan revealed an 8cm brain tumour. It was too late to operate, and Sara died. Sara must have been in intense pain, without appropriate treatment or pain relief, for over ten days.

Mencap[21]

In general, hospitals' staff attitudes and awareness of the needs of people with learning difficulties are not good. Some staff are patronising and disrespectful and treat people like children … Some doctors over simplify things so that people don't get the right information. Generally doctors talk too fast, use jargon and don't give people enough time.

Monica Hunter, Chairperson, People First (Scotland)[22]

22. In 2006 the Disability Rights Commission (DRC) published the report of its formal investigation into the inequalities in physical health experienced by people with mental health problems and those with learning disabilities, Equal Treatment: Closing the Gap.[23] It showed that people with learning disabilities "die younger than other citizens", and had high rates of unmet health needs, "which may contribute to early death." The report highlighted a "fatal complacency" in the NHS which had contributed to this situation.[24]

23. In 2007 a report by Mencap, Death by Indifference, described the cases of six people with a learning disability who had died, following unsatisfactory treatment while in the care of the NHS.[25] The report argued that "their deaths were avoidable…and occurred because of discrimination, indifference, lack of training and a very poor understanding of the needs of people with a learning disability".[26] It prompted the Minister for Care Services to comment that there appeared to be "systemic indifference" in the NHS towards people with learning disabilities.[27]

24. Following these two reports, the Secretary of State for Health ordered an independent inquiry into access to healthcare for people with learning disabilities to identify the action needed to ensure adults and children with learning disabilities receive appropriate treatment in acute medical (hospital) care and general primary care. The inquiry was established on 31 May 2007 and is due to report in June 2008.[28] The Health Service Ombudsman for England is also conducting an independent inquiry into each of the six cases highlighted in the Mencap report.

Victims of crime

In a particularly disturbing murder case involving a man with profound learning difficulties, a teenage girl and two men tortured 38-year-old Steven Hoskin before forcing him to his death from a 100ft viaduct in St Austell, Cornwall … Yesterday, they were jailed for murder and manslaughter. As well as drugging him with 70 paracetamol tablets, burning him with cigarettes and forcing him to walk around on a dog lead, the offenders made Mr Hoskin confess to being a paedophile before killing him.

Guardian, Society, 31 July 2007

25. In the last year there has also been widespread media coverage of the deaths of a number of people with learning disabilities, following serious assaults and abuse. They include Steven Hoskin (see above); Kevin Davies, who was locked in a garden shed in Gloucestershire, where he was beaten, burned and humiliated before he died; Raymond Atherton, who was subjected to a long campaign of physical abuse at the hands of local teenagers before being beaten and thrown into the River Mersey in Cheshire, where he died; and Brent Martin, who was beaten up and left to die on the street in Sunderland. These cases gained public attention.[29] They prompted increased concern on the part of people with learning disabilities and their organisations about whether the victims had been subjected to crime because they had learning disabilities. The Crown Prosecution Service launched a policy for prosecuting such crimes in February 2007.[30] In December 2007, it was announced that the Home Office planned to produce good practice guidance for the criminal justice system and local authorities to address issues of hate crime against people with learning disabilities.[31]

Are people with learning disabilities especially vulnerable to infringements of their human rights?

It is hard to make decisions. Sometimes help is needed. Nobody listens. People in the street do not understand. We should be treated as individuals, this would help us take control.

Speakeasy N.O.W. Self-Advocacy Organisation[32]

26. In the light of each of these high-profile instances and reports of abuse, ill-treatment and discrimination against people with learning disabilities, we consider that it is timely for Parliament to consider the extent to which the United Kingdom is meeting its domestic and international obligations to respect and protect the human rights of adults with learning disabilities.

27. The evidence we have received confirms that adults with learning disabilities are particularly vulnerable to a lack of respect for their human rights.

People with learning disabilities may not be aware of their human rights because information about their rights is not easily available in simple, easy to understand formats. [33]
Expectations have traditionally been low for people with learning disabilities, so that the lack of a job, an impoverished home environment, the absence of social relationships, and a lack of privacy and dignity, are often accepted without comment. As Rob Greig, National Co-Director for Learning Disabilities, told us:

The existence of negative attitudes and prejudice may mean that breaches of their human rights are not treated seriously. For example, Respond, the Ann Craft Trust and Voice UK told us:

People with learning disabilities are often socially marginalised and isolated. They may live in segregated settings with few, if any, social relationships with people living in the wider community. Infringements of their human rights are thus less likely to be observed or addressed.[36]
People with learning disabilities tend to be dependent on paid or unpaid carers.[37] This makes it hard for them to challenge the care they receive, even if they feel something is not right.
Difficulties in understanding and communication may mean that people with learning disabilities may be more susceptible to manipulation and exploitation and so vulnerable to certain kinds of crime and abuse.[38]
People with learning disabilities are less likely than other people to be aware of whether an action against them abuses their human rights,[39] to make a complaint about any such infringements, or to report a crime against themselves.[40] They consider that they are also less likely to be believed, even if they do so.[41] In the words of one witness:

28. Witnesses told us that the human rights of some groups of people with learning disabilities are likely to be particularly at risk. These include people with profound and multiple disabilities, who may not be able to communicate through speech;[43] people whose behaviour poses a challenge to the staff and services that work with them;[44] people from black and minority ethnic communities, who may not find accessible information or appropriate and culturally sympathetic support readily available;[45] and people who have been placed in service settings many miles away from their families and communities of origin.[46] Our evidence suggests that such people face additional hurdles in securing support for their human rights or in disclosing infringements of them.

29. In this report we include short examples, or stories, from the evidence we received to illustrate the wide range of ways in which the human rights of people with learning disabilities are not being respected, despite the positive developments in policies affecting people with learning disabilities in the last few years.

The policy context

30. The overall direction of policy guiding services for people with learning disabilities is similar in all four nations of the UK - a commitment to enabling people with learning disabilities to live as equal citizens in the community alongside their non-disabled peers, with choice and control over their lives, and the support they need to enable this. This policy is set out in England in Valuing People,[47] in Scotland in The Same as You?[48] and in Wales in the recent Statement on Policy and Practice for Adults with a Learning Disability.[49] In Northern Ireland, The Bamford Review of Mental Health and Learning Disability published its final report on legislative reform (including proposals on mental capacity legislation) in August 2007.[50] This was the last of a series of 11 reports produced over a period of five years, including Equal Lives: Review of Policy and Services for People with a Learning Disability in Northern Ireland in September 2005, Human Rights and Equality of Opportunity in October 2006, and Promoting the Social Inclusion of People with a Mental Health Problem or a Learning Disability in August 2007. The values base and overall policy goals in the four countries are similar, though only the Northern Ireland reports refer explicitly to human rights to any degree. The service frameworks for implementing policy on the ground differ from country to country.

31. We received evidence from across the UK, but most was from organisations and individuals in England. Consequently, this Report will focus largely on the policy framework in Valuing People. However, the human rights standards discussed in this Report are universal. We consider that most of the conclusions that can be drawn from the evidence are equally relevant to all four countries of the UK. Equally, we hope that our recommendations and conclusions will inform the development of policy and practice by each of the devolved administrations, as well as central Government.

32. Our concern, is that the provisions of the Human Rights Act have not been implemented effectively, or with adequate guidance from Government. As a result, the Act has been insufficiently understood and applied.[51] By taking a positive approach to their human rights obligations under the Human Rights Act, the Disability Discrimination Act (as amended) and the common law, public authorities could improve the delivery of public services for all, particularly for vulnerable groups for whom they should offer protection, like adults with learning disabilities. We consider that the creation of a culture of respect for human rights will help lead towards a society where everyone, including adults with learning disabilities, is treated fairly, with equality and with dignity.

Where we are now: Are we valuing people?

33. Since 2001, the delivery of services and support for adults with learning disabilities in England has been framed by the cross government Valuing People White Paper.[52] Its key message was that people with learning disabilities are, above all else, people and citizens. The role of public services was to help them live full and equal lives in the community. The White Paper had at its heart four underlying principles - rights, independence, choice and inclusion - and an ambitious programme of work to deliver change in these areas. This included commitments to reducing health inequalities, increasing the range and choice of housing available, modernising day services and increasing access to employment. New mechanisms for delivery were also introduced, such as person centred planning, health action planning for individuals, and the establishment of multi-agency Learning Disability Partnership Boards in local areas. All these provisions should have improved the chances of people with learning disabilities becoming enabled to enjoy their human rights. The lack of explicit reference to human rights in the White Paper (apart from a passing reference to the Human Rights Act 1998, along with other relevant legislation, in the section entitled "Our Values") is noticeable and unfortunate, given the White Paper's vision that:

34. Despite the good intentions of Valuing People, and the positive reception to it in the field, a review of progress on its implementation four years later, entitled The Story So Far, revealed that not much had changed for many people.[54] Many mainstream public services had not taken its messages on board. Some groups (like those with complex support needs) had missed out on progress. Perhaps, most significantly, the review pointed out that:

35. The Story So Far revealed progress in some areas. People were being listened to more both about their individual lives and in service planning. Person centred planning, done properly, was making a difference to people's lives. The Supporting People programme (designed to help vulnerable people retain their housing tenancies) had helped many to live more independently.[56] Direct payments (through which people were given the cash equivalent of the cost of the services they were assessed as needing, so they could purchase their own choice of support) had helped to change some people's lives.[57] But in other areas (eg access to paid work and to good quality healthcare) progress had been disappointing.[58]

36. In May 2007, the Government announced its decision to "refresh" its policy with the publication of Valuing People Now - a consultative draft of the Government's intentions for improving services for people with learning disabilities between 2008 - 2011.

37. Valuing People Now was published after our inquiry concluded and we have not taken evidence on the substance of the consultation document. The Government's consultation process will finish at the end of March 2008.[59]

38. Valuing People Now identifies five priorities for action: "... personalisation, what people do during the day, better health, access to housing and making sure that change happens".[60] A table at the end of each section summarises the different goals, and how progress on each will be measured. In the light of the evidence which we received on the gap between the aims of Valuing People and the experience of adults with learning disabilities, which we consider below in Chapter 4, we are concerned that in Valuing People Now there appear to be few measurable targets for action nor precise proposals for monitoring progress on their achievement.

39. The Minister for Care Services reassured us that this document would focus on human rights.[61] We were disappointed that references to human rights are noticeably absent from the main body of the document, although their salience to what is proposed is recognised in the Secretary of State for Health's "Foreword":

40. We are pleased to note that the Government is committed to "fully consider and respond to the conclusions" of our Report in the course of formulating their priorities for 2008 - 2011. We expect the Government to give the recommendations and conclusions of our Report serious consideration during preparation of the final version of Valuing People Now and in setting its priorities for action for the next three years. We consider that Valuing People Now presents a valuable opportunity for the Department of Health to take a positive approach towards the promotion of the understanding and protection of the human rights of adults with learning disabilities. We recommend that, when redrafted after consultation, Valuing People Now should explicitly promote a "human rights based approach" to public authorities' duties under the Human Rights Act; and should provide practical guidance for public authorities on the effective implementation of those duties.

41. A number of other Government policy proposals have been relevant to our work on this inquiry. The core issue of increasing people's choice and control is central to the government's strategy on Improving the Life Chances of Disabled People, both generally and in its wider plans for health and social care reform, contained in Our Health, Our Care, Our Say. The former report established the cross government Office for Disability Issues ("ODI") which will publish its five year Independent Living Strategy in 2008. Both reports made commitments to modernising social care and developing independent budgets to give people more choice and control over the supports they need to live independently. "Independent living" was defined as:

42. We note that a number of new Government proposals have been announced during the progress of this inquiry. For example, in December 2007, after the conclusion of our evidence taking, the Secretary of State for Health announced the government's vision and commitment for the transformation of Adult Social Care. This was to "set out and support the Government's commitment to independent living for all adults" so that:

43. Against the backdrop of this and other policy developments, designed both to improve the choice and control exercised by people with learning disabilities over their support, and to safeguard them where they are vulnerable, there has nonetheless been substantial evidence of strain on local services and carers. Increasing numbers of local authorities have tightened their eligibility criteria as a result of resource constraints and an increase in the numbers of people with learning disabilities needing support. Valuing People Now includes a commitment to "work to fully assess the impact of the increasing numbers of people with learning disabilities on demand for, and therefore the cost of, services" but makes no reference to the issue of tightening eligibility criteria. We return to this issue in Chapter 4.

10 Speaking at the launch of the Learning Disability Coalition; http://www.learningdisabilitycoalition.org.uk/aboutus.asp. Back

11 Department of Health and Social Security/Welsh Office, Better Services for the Mentally Handicapped, Cmnd 4683,1971. Back

12 Department of Health, Valuing People: A New Strategy for Learning Disability for the 21st Century, Cm5086, March 2001. Back

13 Q 154. Back

14 Nicola Smith and Rob Greig are the Co-National Directors for Learning Disabilities. We invited both to give evidence, but Ms Smith was unable to attend. When we refer to the National Co-Director we refer to the evidence of Mr Greig. Back

15 Ev 79. Back

16 Healthcare Commission and Commission for Social Care Inspection, Joint Investigation into Cornwall Partnership Trust, July 2006. Back

17 Ibid, p 62. Back

18 Healthcare Commission, Investigation into the services for people with learning disabilities provided by Sutton and Mersey Care Trust, January 2007. Back

19 Ibid, p6. Back

20 Healthcare Commission, A life like no other: a national audit of specialist inpatient healthcare services for people with learning difficulties in England, December 2007. Back

21 Ev 140. Back