Westminster Hall
Thursday 5 March 2009
[Janet Anderson in the Chair]
Adults with Learning Disabilities
[Relevant documents: Seventh Report from the Joint Committee on Human Rights, Session 2007-08, HC 73, and the Government’s response, Cm 7378, and further response, Cm 7536.]
Motion made, and Question proposed, That the sitting be now adjourned.—(Mark Tami.)
2.30 pm
Mr. Andrew Dismore (Hendon) (Lab): It is a year to the day since we published the report. It takes quite a while for these debates to work their way through the system, but that does not mean that this one is any less important. Human rights matter most to vulnerable people, and adults with learning disabilities are among the most vulnerable people in the UK. We began our inquiry two years ago, in the light of shocking revelations about the treatment of adults with learning disabilities, including years of abusive practices in Cornwall, neglect and institutional abuse in Sutton and Merton, and six deaths in NHS care, described by Mencap in its report “Death by indifference”. Those tragic events suggested that the human rights of adults with learning disabilities are not well respected in the UK. Indeed, 10 years after the introduction of the Human Rights Act 1998, we still found it necessary to underline in our report the fact that adults with learning disabilities have exactly the same human rights as everyone else.
Throughout our inquiry, I had mixed feelings of admiration, sadness and anger. I had admiration for the huge number of family carers, battling against the odds; admiration for the dedication of professional carers, such as the one we met at the Home Farm Trust, who helped to take someone with extremely profound learning difficulties on holiday to Spain; and admiration for the many people with learning difficulties achieving so much for themselves when given the chance to do so, despite consistently unfair low expectations.
I was saddened by the story of the Lewisham college teenager who could not go out with her friends, because there was no one to take her and she was not allowed out alone, and by the story of the other student I met there, who had experienced the death of no fewer than five of his school friends during his school life. I felt anger at the many tales of avoidable discrimination, blatant hostility and neglect. We on the Committee learned a great deal ourselves—probably more than in any other inquiry in which I have been involved. We learned how people with learning disabilities have been dehumanised through stereotyping for centuries, suffering discrimination and ill treatment and seeing a lack of respect for their rights as part of everyday life. We learned how low expectations mean that people with learning disabilities are unlikely to have a job, are more likely to live in poverty, will not have normal social relationships and will continually suffer a lack of privacy and dignity. We were told, “No one is up in arms about
how little choice we have over our everyday lives.” We all need to recognise that people with learning disabilities have the same rights as everyone else and are entitled to equal treatment.
Under my chairmanship, the Joint Committee on Human Rights has emphasised how the Human Rights Act can improve the lives of everyone in the UK. Too often, the Act has been derided as a charter for criminals, with nothing to offer ordinary people, or it is regarded by public bodies as another regulatory provision with which to comply, ending in a legal department tick-box exercise. We argue that the Human Rights Act has the power to transform the provision of public services for the benefit of all. By focusing first and foremost on the rights of service users, public services can be tailored to meet the needs of users, rather than those of providers. I shall give examples later of how the Human Rights Act could help the delivery of services to adults with learning disabilities.
Dr. Stephen Ladyman (South Thanet) (Lab): Does my hon. Friend share my wish to advertise more the positive impact of the Human Rights Act, particularly for people who need care services? There are myriad examples of people who have been abused or denied proper services—older people, people with disabilities and people with learning disabilities—and who have been able to restore their rights because of the Human Rights Act. It is ridiculed in many areas of the press and we should advertise its successes far more widely.
Mr. Dismore: I agree. Such positive stories do not fit the media narrative. This is not just about case law; there have been plenty of cases in which the Human Rights Act has been used in a positive way to help the rights of people who are at a disadvantage. It is also about trying to instil a change of philosophy and approach in public services, so that people need not go to court, because public services are delivered in a positive, human rights-compliant way—that is, in a way that is respectful towards the service user. We found plenty of examples of that, not only in this inquiry, but in many similar inquiries that we have undertaken.
During our inquiry, we received more than 200 submissions, including dozens from people with learning disabilities and their carers. We took advice from the British Institute of Learning Disabilities on how to engage adults with learning disabilities. We took oral evidence from people with learning disabilities. We visited Lewisham college, where we spoke with learners and staff in their school of supported learning. We met members of a local KeyRing housing and support network in south-east London. We visited people with more complex and profound learning disabilities at a resource centre in Bidford-on-Avon and at home in supported accommodation in Evesham.
We published our report a year ago in formats including easy-read and audio versions, which we believe is a first for Parliament. A key barrier facing people with learning disabilities is the lack of accessible information, both about matters of interest to them and about their rights. The Government reply was published in May 2008 and we received a further reply in January this year, when the latest version of “Valuing People Now”, the Government’s delivery strategy for adults with learning disabilities, was published. We also published a report
on the UK’s plans for ratifying the UN convention on the rights of persons with disabilities, to which I shall return.
I very much welcomed the positive spirit in which the Government engaged with the Committee during its inquiry and the serious consideration that they have given to our report. However, I have a number of questions to ask my hon. Friend the Minister about the new version of “Valuing People Now”, even though I am pleased to note that the document addresses a number of our key concerns. The Government’s strategy for adults with learning disabilities is now more explicitly rooted in human rights and equality, and it is for the Government to deliver that rightly ambitious agenda.
There was some good news, too. The old long-stay hospitals have largely gone, but there is still, unfortunately, institutionalised living, with the needs and lifestyle of the individual sacrificed to those of the institution or organisation caring for them. Most people with leaning disabilities now live for much longer and many more survive childhood. There are many active self-help groups. Spending on adults with learning disabilities has doubled, yet there remains huge pressure on budgets. Person-centred planning, the Supporting People programme and direct payment systems all help to encourage independent living. There is much good practice, as we saw on our visits, but there remains a yawning chasm between the policies of “Valuing People” and “Valuing People Now”, and the everyday experiences of adults with learning disabilities.
I shall now deal with some of the key themes of our report, including supporting adults with learning disabilities in their everyday lives, parenting, health care, the criminal justice system, information provision and advocacy. Those issues affect people with learning disabilities throughout the country every day. I shall conclude by considering what the Government and we in Parliament can do to respect the human rights of adults with learning disabilities better and to improve their lives.
One of the main ways in which relatively minor changes could have a disproportionately beneficial impact on adults with learning disabilities is by supporting social relationships and community participation. We heard how staff rotas in residential accommodation too often determine when adults with learning disabilities can go out and when they must return home. Residents may be able to go out only if they are in a group, accompanied by carers. One resident told us, “Our carers’ shifts change at 9 pm, so we have to leave the leisure centre at 8.30.” Another told us that his carer had said that he could not kiss his girlfriend—the carer said, “We’ve got to draw the line somewhere.” Many complained, “We’re stuck at home”, “We’d like to go to bingo or the pub” or “We have to go out in a group.” Maintaining family contact was sometimes difficult if the person with learning disabilities was placed by the council in out-of-area accommodation.
Tightening local authority eligibility rules has led to the prioritising of those with complex needs at the expense of those with less serious problems but, inevitably, smaller sums can disproportionately benefit the less disabled. A small amount of money can go an awfully long way. The factors that I have set out inevitably discourage adults with learning disabilities from forming
friendships and relationships—the type of interaction that most people take for granted. In “Valuing People Now”, the Government say that they will work with the Care Quality Commission to address that problem. I welcome that: relatively small changes in practice will make a huge difference to the lives of adults with learning disabilities. Will the Minister confirm that that is a priority area for improvement?
Housing and genuine choice about housing are of great importance. A high degree of independence is possible with appropriate support, as our visit to KeyRing and our discussions with its residents showed. Indeed, one resident said that she seemed to be looking after the carer, rather than the other way round. There is an unnecessarily strong risk-averse approach to helping people to live independently, which closes down options to the detriment of choice. Paid employment is also very difficult to obtain. In that respect, there has been very little progress, and it is often hampered by benefits issues, yet people with learning disabilities are, with the right support, motivated and reliable employees, as we saw, for example, at Lewisham college. I have visited a similar project in my constituency and seen the same there.
Adults with learning disabilities have the same right to vote as everyone else. In practice, however, it is all too common for staff in polling stations to jump to the conclusion that they lack the legal capacity to vote and they are turned away. We in political parties, too, can be guilty of such assumptions when campaigning. The test is whether the individual has the capacity to understand in broad terms the nature and effect of voting, and has the ability to make a choice between the candidates. We called for more guidance to be made available to returning officers, so that they can train their staff to respond correctly to voters with learning disabilities. The Government said that that was a matter for the Electoral Commission. Will the Minister take up that matter with the commission?
Mr. David Drew (Stroud) (Lab/Co-op): What my hon. Friend says is important. When I first stood for Parliament in 1992, I was shocked to find that I could not translate into some form of symbolic representation who I was and why I was standing. There is no way to do that other than through those who work with people who have learning disabilities. Things may have improved in the wider electoral process, but surely there should be some service to allow us to communicate our electoral material so that all people can make a choice? Otherwise, some people, I am sure my hon. Friend agrees, are excluded from the process.
Mr. Dismore: I very much agree with my hon. Friend. I shall say a little more about Parliament later, but the main political parties ought to consider whether it is possible to produce electoral material in easy-read format. Much material is produced in minority community languages, and I produce a lot of localised information in those languages. However, my hon. Friend is right to say that producing such information in easy-read format can be difficult.
The Committee made a series of recommendations on parenting. Too often, it is assumed that adults with learning disabilities cannot look after their children properly. That leads to family break up and the forced removal of the children, with associated harm to the
children and their parents. Often, all that is needed is some targeted support to keep a family together, allowing parents to demonstrate that they can look after the child, and that they can respond to risk in a way that is both proportionate and necessary. For instance, we were given the example of a learning difficulties mother being asked to demonstrate on a robot baby that she could look after her child; she found it rather difficult to relate to the robot, so it was not a good test.
The Government’s good practice guidance should reduce the risk of parents and children being wrongly separated as a result of such unjustified assumptions. However, we heard evidence that the guidance is not being implemented. Routine information that is normally given to parents without learning disabilities is not provided in an accessible way to those who have such disabilities. How is the Minister monitoring the implementation of the guidance, and what can he do to deal with examples of bad practice?
Mr. Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab): I thank my hon. Friend for giving way, and I apologise for the fact that I have to leave early to catch the plane.
My hon. Friend mentioned the Government recommendations. Given our expectations of an equality Bill later this year, does he agree not only that the role of public bodies at present should most certainly be confirmed, but that if we can improve upon existing legislation in respect of public authorities, the Bill is a good opportunity to do so?
Mr. Dismore: I am grateful to my right hon. Friend. He has a good and strong record in standing up for people with disabilities. I look forward to more detailed comments from him when we debate that Bill. I assure him that my Committee will take a close interest in the measure, both generally and from the perspective of this debate.
The Committee was gravely concerned about the wealth of evidence that we received about degrading experiences in health and residential care settings. We heard of a teenage student at a Scope residential school who was in hospital for three days. He was given no food; the hospital staff said that they “didn’t know how to feed him”. We were told of a person with Down’s syndrome being locked in a minibus in a garage overnight; on another occasion, the carers broke his foot when forcing him back on to the bus in which he had been locked.
We also heard of a lack of dignity and privacy. One person said, “Although I was given a key to the front door, there was no key to my own room”, and “When I clean my room, they do it again”. Someone with visual impairment and scoliosis who could not help bumping into things was strapped into a wheelchair. The Sutton and Merton inquiry into physical and sexual abuse found that the staff did not know that they were doing anything wrong. That is all compounded by the fear that people have of complaining. They think that they will get the blame, and they face negative and patronising attitudes, and often blatant discrimination.
We welcome the Government’s commitment to using the NHS operating framework to require health authorities and trusts to draw up action plans to deal with shortcomings in the care of adults with learning disabilities identified by the Healthcare Commission. Will the Minister update
us on progress with that initiative? How can he ensure that the work leads to real improvements and not just more bureaucracy? We took a keen interest in the pilot programme run by five NHS trusts. Supported by the British Institute of Human Rights, they have adopted a human-rights approach to their work. The recent evaluation of the pilots was positive, and referred to improved practices and outcomes. We would like that initiative to be rolled out nationwide. Will the Minister tell us what is happening to spread that good practice, and will the initiative be rolled out countrywide?
We welcome the establishment of a human rights advisory group in the Department of Health. Will that group seek to champion human rights in social care settings as well as in the NHS? Will it work alongside the Care Quality Commission on that matter? The Committee recommended that people working with vulnerable adults should be under a duty to report suspected abuse. The Government agreed to consider whether new legislation would be practicable and useful, and are now encouraging a debate on the question. Again, I press the Minister to look at carefully at this. Our clear view is that new legislation is necessary to help identify and prevent abuse.
Adults with learning disabilities are particularly vulnerable to crime; they are also vulnerable within the criminal justice system. They are particularly vulnerable because of their lack of knowledge of their rights and because of their low expectations. That often leads to the acceptance of ill treatment without comment or complaint. They do not always realise that they are the victims of crime or that they are being treated as such by the authorities. They are vulnerable as a result of social marginalisation, living in a segregated environment and depending on others who may be the abusers; and they are susceptible to manipulation and exploitation as a result of communication difficulties.
It is hard to believe that some evil and ignorant people can target those with learning disabilities. It is hate crime, and it should be seen as such and heavily punished. I shall give some examples. Steven Hoskin was tortured and thrown off a viaduct. Kevin Davies was locked in a shed and tortured. Raymond Atherton was beaten and thrown in a river. Brent Martin was beaten and left to die in the street. The Equality and Human Rights Commission has researched the experience of those with learning difficulties as targets of violence and abuse; I understand that it will publish its findings in late April.
The scope of the problem is underestimated. “Valuing People Now” talks of better guidance and reporting arrangements. Will the Minister consider publicity to highlight the issue and to get the message across that abuse of people with learning disabilities is not abuse, but potentially criminal assault?
The Committee was also concerned to hear that adults with learning disabilities—whether accused of crimes, or as victims or witnesses—are not well served by the criminal justice system. We received a considerable body of evidence suggesting that not enough is done to explain what is happening when dealing with the police, and in court. We were told that when people with learning difficulties report crimes, they may not be taken seriously. The police do not consider the special measures already available to them to help people give evidence.
The Government told us that the Crown Prosecution Service was working on policy and practice for victims and witnesses with learning disabilities, but what is being done to assist those who have been charged with crimes? We were told of someone who was arrested for breach of bail conditions by going somewhere he should not have gone. He said: “If they’d explained things, I’d have been able to do what they said.” Another signed a statement, although he could not read it. We heard of people being interviewed without an appropriate adult being present.
We also heard of the pretty sorry state in the prison service—a lack of support, gaps in provision and the unreliability of screening in identifying learning disability. Prisoners were sometimes excluded from offender behaviour programmes because they could not do them, thus reducing the opportunity for resettlement, and ultimately meaning spending longer in prison because parole or early release was not available without doing the course.
Mr. Oliver Letwin (West Dorset) (Con): At a certain point in my life, I spent a lot of time in prison—prisons, I should say. I was enormously struck by the proportion of prisoners I met who had learning disabilities; and I was struck by exactly what the hon. Gentleman remarks upon—the inability of the prison system to deal with that phenomenon. I was particularly interested in those parts of his report in which he deals with that problem. Does he believe that we need a complete change in attitude inside the Prison Service, making that one of its priorities?
Mr. Dismore: The right hon. Gentleman is absolutely right. There are many people in prison with learning difficulties who, frankly, should not be there and who cannot cope. I can do no more than refer to the recent report from the Prison Reform Trust, entitled, “No One Knows: Prisoners’ Voices”, which supports in much greater detail the findings of my Committee. The Committee might want to return to that issue in the future.
Perhaps the Minister can reassure us that the police, judiciary, Courts Service, prisons and other criminal justice agencies are addressing the problem. Intermediaries can help to explain questions and proceedings in court to people with learning disabilities. However, funding has been devolved to primary care trusts, which could lead to a postcode lottery. Can the Minister comment on the role of intermediaries and ensure consistent provision for this service nationwide? Underpinning many of our concerns is a lack of awareness among public sector staff not just about how to respect the rights of adults with learning disabilities, but that those rights even exist in the first place. The Government told us that this issue was being addressed through the undergraduate and postgraduate curricula for professional, regulatory and educational bodies. We welcome this, but what is being done about existing staff?
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