Panel 1: Relationships, carers and support

A HUMAN RIGHTS BASED APPROACH

Awareness and human rights

1. In response to questions about whether taking a human rights based approach to the provision of services for people with learning disabilities would make any difference, Alison Giraud-Saunders told the Committee that people with learning disabilities speak more about rights since the publication of Valuing People, but that they will talk more generally about 'rights', rather than specific human rights. Although this change in focus was clear, she was concerned that practical follow through was lacking. People with learning disabilities are not sure how to enforce their rights or are scared to press for their rights in case it will affect the services they receive. It would help if there was better access to advocacy services for people with learning disabilities.

2. Philippa Russell told the Committee that people with learning disabilities are concerned about rights and entitlements, but the concept of human rights is often expressed in a very abstract way. People with learning disabilities may use the language of 'rights', but may have an inexact view on what rights are and how to achieve them without access to appropriate information and an understanding of how 'human rights' inter-relate with rights and entitlements under other legislation. Although a lot more work needs to be done on implementation, the HRA and disability legislation can be used to give people enhanced rights and create positive expectations. She expressed her grave concern that, although the Disability Discrimination Acts had made significant improvements in people with learning disabilities' access to (and expectations of) services, the Disability Equality Duty on public services might be weakened if proposals within the Government's current consultation on the Discrimination Law Review were incorporated in the forthcoming Single Equality Act. Where the Disability Equality Duty works well, there is better awareness of rights by providers and recipients, because both are active partners in the development and delivery of the Disability Equality Scheme and related action plan to progressively improve the quality of the public service in question.

3. Richard Jackson told the Committee that while a human rights based approach is an important element in the 'care scenario', RESCARE is concerned for those people with severe and profound learning disabilities who are without capacity to make considered life affecting decisions or to activate rights on their own behalf. For they and their families, the new Mental Capacity Act 2005 will prove invaluable, with a parent or close family member able to apply to be appointed to the role of deputy to act on behalf of their dependent son, daughter or relative, including acting to ensure that they benefit from the protection of the various human rights instruments.

Human rights training

4. Philippa Russell told the Committee that more training is needed for people with learning disabilities and their carers on the Disability Discrimination Act and HRA and how to use and maximise their potential. However, any training must be supplemented by regular updated information and by improved access to advice and advocacy services. She considered that misunderstanding and lack of information often negate the good intentions of human rights legislation.

FAMILY CARERS AND INDEPENDENT LIVING

5. Committee members asked about the role of family carers and service providers in supporting independent living. The Committee also asked whether family carers were likely to stand in the way of independent living for people with learning disabilities. The following points were made in discussion.

6. Philippa Russell noted that worrying about the safety of their children is common to all parents. She was confident that the vast majority of parents of people with learning disabilities are not over-protective and want a good life for their children, with maximum independence. She and her husband were committed to encouraging their son to develop maximum independence and to take sensible risks so that he could cope in adult life, in particular when his family were no longer able to support him. She thought that this approach was typical of most family carers. Often, if parents (whether parents of those with or without learning disabilities) sought to prevent their children from pursuing a particular course of action it would be well-intentioned and with a view to ensuring that their child did not follow a path that would lead them into danger. However, she felt that family carers and people with learning disabilities should be encouraged to be more ambitious about the future - particularly when planning for transition to adult life. She noted that she and her husband had 'fought tooth and nail' to enable their son to move out of a group home into a house of his own. The family was now supporting him in setting up a small business of his own. In effect, the family was determined to give him the same life chances enjoyed by his siblings but many families did not have the information, the opportunities or the encouragement to go down this road. She felt strongly that we should follow the example of the USA, where family carers and people with learning disabilities see each other as 'allies', working towards the common goal of 'ordinary lives'.

7. Viv Cooper told the Committee that currently there are some exciting developments in service provision, but that good provision and access to services are not typical. Often families would need to work very hard to achieve the appropriate care and services for their relative with learning disabilities. Although sometimes there is tension between family members (i.e. between the person with learning disabilities and their family carer), working together as allies is the way forward.

8 Richard Jackson expressed the concern of RESCARE that not everyone with learning disabilities can live independently. RESCARE consider that the extent of their dependency is often overlooked in considering supported or independent living. Family input (70% of caring is within the family home) is very important and families have a prime role to play. For people with learning disabilities, the one stable lifelong relationship they have is with their families. This was acknowledged in Valuing People. RESCARE consider that this importance was further evidenced when the widespread abuse events in Cornwall's supported living service were brought to light by 5 families who refused to be intimidated and ignored.

9. He told the Committee about the effects of Fragile X syndrome on his family. He has a 57 year old son, two grandchildren and a great nephew with varying degrees of learning disability and/or autism. He stressed that he has a close and happy family, but that it is important to recognise that the needs of each of his relatives with learning disabilities are different. His family had to fight for each of their relatives with learning disabilities to get appropriate services. For example his great nephew after 3 years at a residential school, on leaving at 18 with no care planning or transfer to adult services after 3 days he was sectioned into the Acute Psychiatric Ward of the local General Hospital. After 18 months he was freed when the Ombudsman admonished the local authorities, fined them £30,000 and commended the perseverance of the family who challenged the authority.

10. The needs of each individual are different, but RESCARE consider that local authorities increasingly impose supported living and refuse funding or referrals to other options, and so, a dangerous "one size fits all" is developing. RESCARE agree that there should be supported living for those who can cope and respond but seek to have 'Valuing People' and its choice in housing options implemented in full (i.e. small scale ordinary housing, supported living and village and intentional communities, as well as residential care). They were concerned that no option should be ruled out.

Independent living and care planning

11. Philippa Russell stressed the need to have good quality person-centred planning for people with learning disabilities. Person-centred planning should actively involve people with learning disabilities and family carers and should focus upon improving life chances rather than on crisis intervention. She noted widespread concern about changes in the funding of further education and the loss of courses which had historically often enabled people with learning disabilities to acquire both skills for independent living and for vocational training and subsequent employment. She also noted growing concern at the 'postcode lottery' experienced by many families, with wide variations in the provision of high quality local services for people with complex disabilities. She emphasised the point that people with high individual support needs can live in local communities but the growing inappropriate use of 'out of area' provision for people with complex needs demonstrates the need for better investment at local level in developing a wider range of services. She also referred to a recent Disability Rights Commission/Guardian roundtable discussion on the future of social care, where local authorities argued that PCTs (Primary Care Trusts) were increasingly expecting local authorities to cover care costs which should be joint funded. The Government's emphasis on commissioning for 'health and well-being' (i.e. joining up health and social care assessment and commissioning) was welcome, but there were currently wide variations in policy and practice.

12. She told the Committee that there needs to be more creative commissioning and a dynamic appraisal of what is meant by 'independent living'. It is not just about throwing people out into the community and currently most local authorities feel that their budgets are insufficient.

13. She regretted that the Independent Living Bill is unlikely to become law at this stage, but considers that this Bill could help make independent living a reality for many people with learning disabilities. Currently, there is not enough money given the rapid increase in the number of disabled people and children with complex needs. She highlighted a number of other issues which were currently overlooked in funding for care planning:

• More older people are caring for people with learning disabilities;
• More people with learning disabilities are themselves becoming carers, looking after children or supporting partners, parents or other relatives;
• Need for more investment in education for people with learning disabilities;
• Need to track children with learning disabilities through transition into adult life.

15. In considering independent living (which many people with learning and other disabilities consider to be a crucial human right), she drew attention to the Disability Rights Commission's definition of independent living.[480] She was concerned that 'independent living' was often viewed very narrowly, when in practice it meant people with learning disabilities (and their families) having the right to make active choices about where and how they wanted to live, with appropriate support. She also emphasised the importance of high quality support for family carers, so that they could be 'allies' in helping their relatives to achieve maximum independence. She noted that the Carers (Equal Opportunities) Act 2004 had not been implemented as intended in every area. Supporting family carers well would in turn ensure that their relatives could lead valued and fulfilling lives.

16. She told the Committee that inadequate data is held on people with learning disabilities and family carers. There is not enough detail about local need and so services have developed in an ad hoc way. Alison Giraud-Saunders stressed that there are "pockets" of good practice in data gathering and strategic planning. Sheffield is one example of such good practice, with a longstanding and robust register of people with learning disabilities. They have excellent data and make good use of it, for example in planning for the transition of young people with complex needs, or for ageing family carers. They are very unusual. However, they probably still do not know of everyone who may have a learning disability in Sheffield.

Independent living and people with complex support needs

17. When asked about independent living and people with complex support needs, Richard Jackson told the Committee about his concern that some people with learning disabilities are without capacity from birth. In these circumstances, the role of families is very important. Little is said about family advocates. However, RESCARE believe that families are the natural decision makers on the behalf of people with learning disabilities.

18. Richard Jackson expressed his concern that independence is not the prerogative of supported living. He told the Committee that there are some people with learning disabilities who are not going to be independent. RESCARE believes primarily in the right to choose. People with learning disabilities and their parents should have choice between a variety of service options. RESCARE are seriously concerned about the declining service with the closure of special day and residential schools, day centres and the recent movement campaigning against all residential care provision. They consider that thousands of people with severe learning disabilities and their families are being marginalized and sidelined as a 'crisis led' rather than a 'needs led' service develops.

19. Both Viv Cooper and Philippa Russell told the Committee that their sons, both of whom had complex needs were living in homes in the community, although it had taken an enormous amount of work to make this happen. Viv Cooper told the Committee that her son has learning disabilities, including challenging behaviour and has high support needs. She does not believe that her son is unable to live independently. She stressed that families can co-ordinate, organise, support and manage packages of care. Although families need help and support to do this, it is possible for people with complex needs to live within the community. Although it is possible, it is not typical and the systems are stacked against making it happen. Philippa Russell emphasised that 'independent living' did not mean living in the community without appropriate support.

Housing

20. The Committee asked about the barriers faced by people with learning disabilities who were trying to access housing for supported living. Alison Giraud-Saunders thought that there were three problems: (i) a shortage of suitable housing; (ii) a lack of prioritisation of people with learning disabilities within the system; and (iii) a lack of creative commissioning. She told the Committee that people with learning disabilities are at the bottom of the queue for social housing provision. There are not enough new houses being built allowing people to live with support. An individual with a learning disability who needs support at home may well need a bigger place to live than an individual without a learning disability, such as a two bedroom place rather than one bedroom to accommodate overnight support and allow space for bulky equipment. There is a great shortage of suitable housing. She had heard from families told to evict their son/daughter so that they become eligible for housing assistance. There is currently a lack of creativity in housing provision. For example, in one case, where necessary adaptations could not be made to a family's home to allow their relative with learning disabilities to live there, the PCT sent the person to distant residential accommodation, rather than move the family to a house that could be adapted. The adaptations would have been cheaper than sending the person to residential care.

FUNDING, ELIGIBILITY AND ACCESS TO SERVICES

21. In response to a number of questions about funding, eligibility and access to services, the following points were made in discussion.

22. Philippa Russell told the Committee that having people live in homes in their local communities rather than in specialist out of county residential care could represent a major saving for the local authority. However, she considered that local authorities and PCTs must ensure that there is a strong infrastructure of services to support a successful move towards independent living. Placement breakdowns and crisis intervention are expensive and in many cases could have been avoided.

23. Richard Jackson told the Committee that that there is enough money in the system but raised his concerns that it is not reaching the front line of care as intended, and is not ring fenced. For example, money from selling off former hospital sites for people with learning disabilities has not gone back into the service for people with learning disabilities although this was promised. He told the Committee that people with learning disabilities are at the bottom of the Government's funding priorities. RESCARE considers that supported living conveniently moves the burden of caring for people with learning disabilities from local authority budgets to the benefits system and the budget of central Government.

24. The other witnesses expressed their disagreement with this view. Alison Giraud-Saunders told the Committee that currently there was inadequate funding to meet demographic changes (including increased life expectancy) and increasing demand for services.

25 When asked by Committee members to explain how the current system could be improved without further funding, Viv Cooper told the Committee that the answer lay in the proper management of transition from childhood to adult services, individual budgets and direct payments. It was a real problem within the current arrangements that funding streams couldn't or wouldn't mix. She considered that the system needed to be made simpler in order to maximise current levels of funding and that there needs to be someone responsible for co-ordinating services on behalf of any person with learning disabilities. Philippa Russell added that where a person had access to individual budgets there should be an element of funding within their individual budget allocation for someone to coordinate it. However, people need advice and information and training about what the options are. Currently, too many disabled people and family carers lack the information, advice, training and support necessary in order to understand all possible options and to make informed choices.

26. Alison Giraud-Saunders told the Committee that there are already some good examples of bringing together funding streams well. In order to improve services within current funding limitations, she said local Authorities need good information on people with learning disabilities within their areas of responsibility so that planning can start early. People need to start thinking from early in a child's life.

27. There needs to be more creative thinking and a change in attitudes. Specifically, there is not always as much creative thinking in mainstream services, which people with learning disabilities use, as there is in the better services which are particularly for people with learning disabilities.

CARERS

28. When asked about people with learning disabilities acting as carers for others, Alison Giraud-Saunders told the Committee that more often, as the population ages and people with learning disabilities continue to live for longer, people with learning disabilities are undertaking a primary caring role. However, they are not being recognised as carers and often don't get a carers assessment. There was insufficient data available to give interested parties an accurate view of the breadth of this problem.

CONCLUDING STATEMENTS

29. Philippa Russell told the Committee that there needed to be a wider debate and shared understanding about what we mean by 'human rights'. The concept of 'human rights' should be associated with high expectations of public services and of society as a whole. The shortfall in advocacy services means that many people with learning disabilities lack the support they need in order to make best use not only of human rights legislation but also of disability discrimination and other legislation which might enable them to access services and get a better quality of life. Family carers have human rights too, but sadly understanding and ability to use the human rights legislation to best effect are still limited.

30. Richard Jackson told the Committee that people with learning disabilities need life long care, support and protection to a varying degree according to the extent of their disabilities. It is not a case of one type of provision versus another but a comprehensive service with each having a part to play. There should not be a battle but a united front seeking the implementation of Valuing People in full with its choice of options. He told the Committee that parents and relatives are concerned that we are witnessing, and in danger of allowing, an abdication by the State of any meaningful care of those who cannot care for themselves and that this could only be against their human rights.

Panel 2: Access to justice

HUMAN RIGHTS AND CRIMES AGAINST PEOPLE WITH LEARNING DISABILITIES

31. The Committee asked whether the introduction of the HRA had made any difference to the way that people with learning disabilities were treated by the criminal justice system and whether "taking a human rights based approach" to the provision of public services could help reform negative attitudes. The following points were made in discussion.

32. Robin Van Den Hende told the Committee that the HRA had led to no significant change in the attitudes of the general public towards people with learning disabilities. However, people with learning disabilities have started talking more about human rights and asking for their human rights to be respected. He thought that the HRA has had some effect on professionals in that discussions relating to people's welfare increasingly use both the language of human rights and a human rights framework. He added that good practice aims to, and does, ensure respect for human rights, even if the language of good practice is not the language of human rights.

33. Kathryn Stone thought that the low number of prosecutions for crime against people with learning disabilities raised an interesting and important point. People with learning disabilities are seen to be different and they are treated differently by the media if they are murdered. People know the name of Victoria Climbie, but not the names of vulnerable people with learning disabilities who have been recently killed. The abuse of people with learning disabilities is a crime and needs to be treated as a crime, not just called abuse and dealt with as a disciplinary issue. The point is that if people with learning disabilities are seen as having human rights, they will be seen as being the same as other people.

BULLYING, HARASSMENT AND HATE CRIME

34. Committee members invited the witnesses to expand on how people with learning disabilities are treated by the criminal justice system and by the police. The following points were made:

35. Robin Van Den Hende told the Committee that "abuse" of adults with learning disabilities is not generally treated as a crime, even when that abuse does involve a breach of the criminal law (e.g. assault, sexual assault or fraud). The police are often called late in the process when evidence has degraded and it has become difficult to take statements from witnesses. Recently produced figures on adult protection referrals to Cornwall Adult Protection Committee illustrate this. Between October 2006 and March 2007 62% of adult protection referrals to the Cornwall Adult Protection Committee were either substantiated or partly substantiated. However, the Police were only involved in 9% of those investigations. Only 1% of these allegations led to a prosecution. Part of the problem is that people do not see adults with learning disabilities as people with equal rights to protection by the law.

36. Kathryn Stone told the Committee that research shows that police can fail to identify that a person has learning disabilities and they are reluctant to accept that a crime has been committed because a person has a learning disability. There is some good work being done by police forces to raise awareness about how to identify people with learning disabilities, and support them in giving evidence, including the introduction of the intermediary scheme under the Youth Justice and Criminal Evidence Act. Robin Van Den Hende told the Committee that the answer to the problem is in training in learning disabilities which is uniform across the country. He showed the Committee a copy of the Police Vulnerable Witness Pocket Guide, a credit card sized, fold-out guide for police officers on how to identify and help people with learning disabilities who had experienced crime. The Pocket Guide was produced by VOICE UK, Respond and the Ann Craft Trust in conjunction with the Association of Chief Police Officers and has been distributed to every front line police officer in England and Wales.

37. Kathryn Stone told the Committee that VOICE UK have been campaigning for a long time for people to have equal access to the criminal justice system. This should be put in the context of the development of good practice. The treatment of people with learning disabilities could be compared with the treatment of children in the criminal justice system who are witnesses. While the need to assist children in giving evidence is widely recognised and acted upon, there is not the same recognition that people with learning disabilities can give good evidence providing they receive appropriate assistance. We need to think how to treat people in the criminal justice system if they are "different" and need different treatment to access justice.

38. The report Behind Closed Doors shows that people with learning disabilities sometimes do not know that what is being done to them is a criminal act. Instead, many people with learning disabilities believe that the crime that they suffer is simply a normal part of life. Even if people recognise that a crime has taken place, it can be difficult for people with learning disabilities to communicate their concerns if they have a communication difficulty. It is also difficult if the complaint is about the person providing care as a person with learning disabilities may fear the loss of care, accommodation or other support if they make a complaint and/or make a report to the police. Once a complaint has been made, the CPS may think that the complainant with learning disabilities won't be able to give evidence, or that it will be too stressful for them to do so and this may reduce the likelihood of a successful prosecution.

39. Since the publication of Behind Closed Doors, a number of publications have been produced and there are drives by grassroots advocacy organisations to improve the situation. Their effectiveness is demonstrated by the Sutton and Merton inquiry.

TRAINING

40. Committee members asked whether training needed to be provided to the police and others working within the criminal justice system. The following points were made.

41. Robin Van Den Hende added that the principle reasons why people with learning disabilities were more likely to be victims of crime and abuse are (i) the failure of the public to understand and empathise with people with learning disabilities and (ii) the vulnerability of people with learning disabilities. This vulnerability comes about because crime against this group are seen as being easier to commit and to get away with. This, in turn, is because (a) people with learning disabilities may have different communication needs that may not always be recognised by those to whom they could report crime and (b) the fact that some people with learning disabilities maybe too trusting of other people. The police need training and increased awareness if they are to help people with learning disabilities who have been the victims of crime. Police want to help vulnerable individuals, but some officers simply do not understand learning disabilities and the help that is available to let people with learning disabilities give their best evidence. Kathryn Stone added that any training scheme should be rolled out across the country.

42. Committee members asked whether training also needed to be provided to people with learning disabilities. Robin Van Den Hende stated that it should. He explained that change and training was needed on many levels as there are multiple hurdles that a victim with learning disabilities has to overcome to get justice. Many adults with learning disabilities won't recognise that even serious offences are a crime. They may be too scared and intimidated to report it, especially if the crime has been committed by someone working in their home or service. They may not know how to report it. Education for people with learning disabilities would address this. However, even if they report a crime, a care provider may not take the issue any further. Social care professionals may want to sweep it under the carpet and not go to the police. They may investigate the matter themselves instead of involving the police. Even if the crime is reported to the police, the police do not always consider providing special measures and may think the individual with a learning disability can't give evidence. At prosecution level, the CPS may decide not to pursue a prosecution as they consider that the victim cannot give evidence or that it would be too distressing for them to do so.

43. Training is not currently available across the board or at national level. Police officers may only receive a couple of hours of training on disability during their basic training. Training should be given to police officers on identifying people with learning disabilities so that they can be identified at an early stage in the criminal justice process. The police need to realise what having a learning disability means and how they can meet the needs of people with learning disabilities. The police also need to be aware of the special measures currently available to them.

PEOPLE WITH LEARNING DISABILITIES AS ACCUSED

44. The Committee asked about the problems facing people with learning disabilities accused of crimes. Jenny Talbot stressed the similarities with the difficulties faced by victims. She considered that there needed to be an increased focus on training and awareness. In particular, police officers in custody suites should undertake awareness training to assist in the identification of people with learning disabilities. In addition there needs to be a systematic screen to identify those people who might have learning disabilities. However, it is important to recognise that people often have developed coping mechanisms to hide their learning disabilities which makes it harder for police to identify this group of people. Offending behaviour is not always reported if people live in care homes. The Police may only be called when offending behaviour has got out of control when people with learning disabilities might have benefited from earlier intervention by the police, for example by being cautioned.

45. The Prison Reform Trust consider that the criminal justice system should provide support mechanisms for both suspects and defendants with learning disabilities. A failure to provide this support leads to a significantly increased risk of an unfair trial and miscarriage of justice for defendants with learning disabilities.

46. The Committee asked if the difficulties faced by people with learning disabilities were commensurate with the problems faced by those with mental health problems. Jenny Talbot told the Committee that, if we lifted all people with mental health problems out of prison, there would not be an overcrowding problem and that this would ease the pressure on the system. However, not all people with learning disabilities have mental health problems, although some do. There is also the question as to whether prison is the most appropriate place for helping people with learning disabilities to stop offending.

47. By far the biggest group of people with learning disabilities in prison are those with mild learning disabilities, many of whom are unlikely to 'qualify' for support from community learning disability teams and/or local authority social services departments People with learning disabilities are likely to need additional support to help them to understand what is happening to them at various points within the criminal justice system. The Prison Reform Trust considers that there needs to be more trained "appropriate adults" working in the criminal justice system to support this group of people.

48. On a practical level, the Prison Reform Trust considers that the following changes are necessary:

• Police should consistently be able to identify suspects who might have a learning disability and should be able to make an appropriate referral for assessment;
• People with suspected learning disabilities should not be interviewed without an appropriate adult;
• Appropriate adults should be accessible 24 hours a day, seven days a week; they should be statutorily funded and appropriately trained
• The appropriate adult scheme should be extended into attendance at court with the suspect/defendant ;
• There needs to be reform of the court process to assist people with learning disabilities (and others) to both understand and to participate in their own trial. For example, allowing for court visits pre-trial and providing accessible information at court. These reforms need to be part of a systematic national programme of change.
• Greater opportunities for community orders for people with learning disabilities should be explored and provided.
• Significantly improved data sharing between the different departments of the criminal justice system so that once a suspect has been identified as having learning disabilities the appropriate support can be put into place throughout the criminal justice process.
• Prison regimes should be made fully accessible to the whole prison population. In particular there should be full access to information, offending behaviour programmes and opportunities for education, training and employment

PRISONERS WITH A LEARNING DISABILITY

52. Jenny Talbot told the Committee that, to be considered for parole, prisoners need to demonstrate that they understand their crime and show remorse and are often required to have participated in relevant offending behaviour (cognitive skills) programmes. People with learning disabilities may be excluded from participating in such programmes and may spend longer in prison as a result. This is because offending behaviour programmes tend only to be for people with an IQ of over 80 and with a certain degree of literacy. Cognitive skills programmes are often not accessible for people with learning disabilities. There is a also a problem with accessing support services in prison , for example it is not clear what support should be made available from PCTs and social services. She told the Committee there is a problem of 'silos of information' in prisons, for example information isn't shared between departments, often to the extent that prison staff do not know what support is available at their prison for this group of prisoners if it is provided by another department within the prison. She considered that, in some of the new contracts between PCTS/prisons/social services, the rules on sharing of information are not clear; staff sometimes hide behind patient confidentiality because they are unsure about what information they may share and what they may not.

53. Jenny Talbot told the Committee that, in her opinion, there were potentially more miscarriages of justice for people with learning disabilities than for those without.