INTRODUCTION

  The Norah Fry Research Centre, University if Bristol, has carried out applied research projects on issues affecting people with learning disabilities for more than 20 years. The Centre's mission is to undertake research to make a positive difference to people's lives, and to carry out research with people with learning disabilities themselves. Through our research findings we aim to influence policy, improve services and support, and inform and empower people who use services, family carers and professionals. The Centre is committed to the inclusion of people with learning disabilities in society at large, and to increased respect for their human rights. The Centre has a national, and international, reputation for its work, including that on accessible information, parents with learning disabilities, transition to adulthood, direct payments and self directed support and user involvement in research. All the Centre's work is funded through external project grants. More details about the Centre and its work can be found on our website, www bristol.ac.uk/depts/norahfry, from which summaries of the findings from recent projects can be downloaded. We would be happy to supply further information or copies of reports cited in the evidence below to the Committee, if this would be helpful.

OUR EVIDENCE

1.  The provision of public services such as healthcare, education, housing and welfare benefits to people with learning disabilities; the ability of individuals to access such services and the quality of provision

The problem of getting "trapped in special service land"

  Research undertaken by staff at the Norah Fry Research Centre often has a focus on the support needed by people with learning disabilities, in order to access ordinary community services. In particular, several studies have examined experiences of inclusion or exclusion—within education, and within other services generally available to members of the community. People with learning disabilities are frequently assumed to need specialist services, and their needs are assumed to lie beyond the scope of those services which the majority of the population would use. This in itself constitutes a violation of the right to access generally available services. They become trapped in what has been described as "service land". Examples of this have been evident in many research studies:

EMPLOYMENT

  A European funded study about employment issues ("Sequal" project: 2002-06) included a disability strand that was led by the University of Bristol. People with learning disabilities were found to have very little access to substantial paid work, and this was often because the benefits system made it impossible for them to gain financially from paid work. Thus Beyer et al (2004) found that only about 10% of people with learning disabilities were in paid work, and that they very often they chose to work in part-time occupations, sometimes for as little as 5 hours or less per week. In part, this seems because of fear of affecting benefits entitlement, and in part, it is because some people with learning disabilities feel that they can only manage part-time work. People with learning disabilities in another consultation study (North Somerset, 2007) said they needed better, clear information about jobs and benefits. The absence of substantial paid work results in adults with learning disabilities remaining in "day services".

"Don't forget, you've got barriers still... the benefits problem.... it took me a long time to understand it." (Person with learning disabilities)

  In several research studies (eg Having a Good Day? SCIE, 2005), we have found that support for employment is absolutely vital. In many cases, people are restricted to low-level jobs, and do not have a chance to progress.

"Everyone breathes a sigh of relief when they get a person with a learning disability a job. Job done! But it's not job done. There's the continuation of the support, the extension of the work placement so they don't become bored. So the concept of career can be important, and they do get extended." (Deputy Social Services director)

FURTHER EDUCATION

  Access to further education is another problem for some young people and adults with learning disabilities. Although Further Education colleges do make provision for this group, ongoing research (Everett and Williams) is finding that the majority of young people with learning disabilities are experiencing specialised, `discrete' courses in one area in the South West. This has the effect that their social and educational experience whilst in Further Education is limited. One of the students said:

"It is good coming to college, but like, when you see other people around college, because they think you've got learning disabilities and that, they don't wanna come over and talk to you." (Student in Further Education college)

  Furthermore, there are some groups of young people with learning disabilities whose rights to FE are severely limited. These include people who are labelled as having `challenging behaviour' and sometimes those with autistic spectrum disorders.

MENTAL HEALTH SUPPORT SERVICES

  Access to mental health provision was examined in a recent study (Mind the Gap: 2002-04) which was one of four action research studies funded by the Foundation for People with Learning Disabilities (Foundation for People with Learning Disabilities, 2005). Young people with a learning disability were found to be four times more likely than other young people to suffer from emotional distress. However, their access to mental health provision was severely limited, and our study found that this was at least partly because professionals tend to attribute any symptoms of distress to "the learning disability":

One young person had been involved in an accident in the swimming pool, and afterwards found it hard to accept having a bath: he reacted in ways that those around him interpreted as "challenging". As one member of staff explained, it was hard to work out what was due to his emotional distress, and what was due to his "behaviour". (Evidence from the Norah Fry report in Making Us Count, Foundation, 2005)

FINANCIAL SERVICES

  A scoping review on financial exclusion (Money, Rights and Risks) carried out by the Norah Fry Research Centre between 2003-06 for Friends Provident (Williams et al, 2007) revealed that financial support services often have some very positive strategies for tackling financial capability, for supporting individual clients who are at risk of debt, and for giving practical guidance on dealing with the intricacies of money management—often by direct practical action. All these features of money management would be very helpful for most people with learning disabilities. However, this study found that 74% of the people with learning disabilities relied on parents and carers to control their finances; 86% were confused over their benefits; and only half the sample had a bank account in their own name.

"I'm too scared to go up to the counter—I'm scared. Initially, to set up the account with all the paperwork, I needed help to go through it." (Person with learning disabilities in this study)

  Yet the financial support services (eg Citizens Advice Bureaux; Debt Advice Services) considered that they were unable to meet the needs of people with learning disabilities. There is an assumption that their needs are "specialised" and will be provided by special services.

If I'm honest about it, if someone had a severe learning disability, they would struggle to access even our service, which is designed to be there for vulnerable people—without a support worker.

BARRIERS TO INCLUSION

  From the evidence of all these studies, it would seem that there are several barriers facing people with learning disabilities, when they seek to be "included" in general community provision. These are:

—    attitudes of those around them that their needs can only be met by specialist services;

—    the lack of any accessible information in public services; and

—    their own lack of confidence in pursuing their rights.

2.  The possibility for adults with learning disabilities to form and maintain personal relationships with others (such as partners, parents and children) and the positive obligations of the state which arise in this context

  Recent work at the Norah Fry Research Centre has focused particularly on the rights of people with learning disabilities:

—    to enjoy the full range of personal, emotional and sexual relationships as other people (including same sex relationships); and

—    to be parents and bring up their children.

  Both of these areas of research have revealed overwhelming evidence of the widespread infringement of the rights of people with learning difficulties to form the relationships they choose and to bring up their own children, thus depriving them of the right to respect for private and family life.

  Evidence from these studies has been submitted to the committee separately (see evidence from the Secret Loves, Hidden Lives project and the Working Together with Parents Network). In addition, a survey amongst people with learning disabilities carried out as part of a European (Grundtvig) project (2002-04) has indicated the need for access to ongoing education about sex and relationships, and in particular the access to one-one, private learning about sensitive areas such as parenting, feelings and relationships.

3.  The opportunities for people with learning disabilities to participate in the life of their local community and the state's obligation to facilitate participation

  A current research study (2007) carried out by the Norah Fry Research Centre for the Service and Delivery Organisation of the NHS is about research priorities for Learning Disability over the next 10 years. In the context of this work, we have carried out four major regional workshops with people with learning disabilities, their carers and families, and with professionals who work in the area. These have revealed a number of priorities and issues in the lives of people with learning disabilities, which include:

—    Bullying and hate crime. People said that they were restricted in their ability to go out and enjoy their local community, because of name-calling and hate crime. They urgently wanted something to be done about this problem. They also felt it was important to use the words "hate crime" rather than "bullying", since the latter plays down the importance of what people experience.

—    Getting good support. People in the research priorities workshops returned time and time again to the importance of having the right support. They wanted to have support staff they could trust, people they had chosen themselves, and staff who could support them on an individual basis to use their own local community and enjoy a full range of experiences. This is not always the case at present.

—    Skills for Support (2005-07), another study carried out by Norah Fry Research Centre, investigated the skills of supporters and personal assistants who work for people with learning disabilities on a 1-1 basis. 47% of PA's who responded to our survey had no professional background in either residential care or in social services. The majority were paid between £5-7 an hour, and half of them had not done any training since starting work as a personal assistant. Co-researchers in Skills for Support, who had learning disabilities themselves, and self-advocates who took part in the study felt that:

(a)  more training and support for PAs is urgently needed; and

(b)  people with learning disabilities should be in control of the kind of training their staff have, and wherever possible should be involved in that training.

  One of the models developed in Skills for Support was that of joint training and support, where people with learning disabilities and their support staff come together for training days. The project produced some training materials based on videos made during the research, which are accessible for people with learning disabilities to use, in helping to train their own staff. These will be published by BILD in the autumn 2007 (Skills for Support Team, 2007) and some of the material has already been incorporated into training resources for the new LDQ (Learning Disability Qualification).

  This study found many people with learning disabilities who were being well supported by personal assistants, often through the means of a direct payment. For instance, one young man who had been labelled as having "challenging behaviour" was filmed going to an ordinary youth club with his personal assistant. However, this project also revealed how easy it is for supporters to slip into treating people with learning disabilities as "incompetent" and to be disrespectful and bossy in their everyday interaction with them. This is an ongoing violation of human rights, in the everyday experience of people with learning disabilities.

—    Getting easy to understand information.

  Under the provisions of the Disability Discrimination Act, disabled people should be entitled to receive information in ways and formats that are accessible to them. But the experiences of those who have attended our workshops (Research Priorities project mentioned above) or participated in our research projects show that easy to understand information is still not widely available to them.

  In 2001 NFRC was awarded a grant by the Department of Health (under the Learning Disability Research Initiative which coincided with the launch of the Valuing People White Paper) for the Information for All project. The project was designed to provide evidence-based guidance on how best to provide information for people with learning disabilities across all formats (print, tape,multi media etc). The Information for All project was advised by people with learning disabilities and included a learning disabled staff member. The resulting guidance can be found at www.easyinfo.org.uk(click on `Guides'). A hard copy of the guidance can be provided to the Committee if that would be helpful.

  The NFRC has itself been producing accessible versions of its own and other people's research findings for the last ten years, until recently with funding from the Joseph Rowntree Foundation. The Plain Facts series (http://www.bristol.ac.uk/Depts/NorahFry/PlainFacts/) won a Plain English campaign award for its work in 1999. Copies of Plain Facts are distributed free to 1500 self advocacy groups and day centres across the UK. There have been 50 editions so far on a huge range of topics, including being a parent, employment, housing, college, making a complaint, becoming an adult, independent living, self advocacy, crime and abuse, direct payments, making friends, person centred planning, being involved in choosing staff, services for older people, having a say in housing and your future and many more. A list of previous Plain Facts is available on the website address above. Copies of individual issues of Plain Facts can be provided to the Committee if they are interested.

—    Local facilities which are open and inclusive. Having a Good Day (2005) was a research review of day opportunities for people with learning disabilities, carried out in conjunction with the Foundation for People with Learning Disabilities, for SCIE (Social Care Institute for Excellence). One significant barrier to accessing local facilities was simply that these facilities were often not accessible, in terms of physical access (eg accessible changing facilities for adults in leisure centres); attitudes (eg clubs and groups which welcome people with learning disabilities); information (eg posters, publicity, forms). However, it was also true that people were often held back by the attitudes of those around them, who assumed that they needed specialist services during the day. Those who had good, one-one support, did not have such difficulties, and were able to enjoy their local communities with relative ease.

—    Support and facilities which are culturally sensitive

  Finally, the SCIE work mentioned above also highlighted a few places where support groups for people with learning disabilities from BME groups were working well.

  The Apna Group in Dudley is based at the Muslim Association in the High Street. Asian staff support Asian people with learning disabilities to meet every week to talk and to do fun things together. "All the activities and classes are chosen by group members".

  These initiatives and similar projects were hard to find, and we need to know how to make such work more widespread and sustainable, so that people with learning disabilities from minority ethnic groups enjoy their rights to full participation. It was disappointing to find so little progress in this area since the pioneering research at NFRC in the late 1980s on services to people with learning disabilities from black and minority ethnic communities, Double Discrimination? (Baxter et al, 1990). We are aware of the current activities of the National Learning Disability and Ethnicity Network coordinated by the Association for Real Change (contact bridget.fisher@arcuk.org.uk for further details)and hope that this may focus more attention on this still neglected area.

  We would be very happy to supply further information to the Inquiry on any of the above, or indeed on any other research carried out at the Norah Fry Research Centre.

20 July 2007

References

  Baxter, C et al, 1990, Double Discrimination: issues and services for people with learning difficulties from black and ethnic minority communities. London, King's Fund/CRE.

  Beyer, S.,Grove, B., Schneider, J., Simons, K., Williams, V., Heyman, A., Swift, P. and Krijnen-Kemp, E. (2004) Working lives—the role of day centres in supporting people with learning disabilities into employment (Department for Work and Pensions: report 203) http://www.dwp.gov.uk/mediacentre/pressreleases/2004/feb/iad-0902-wl.asp

  Foundation for People with Learning Disabilities (2005) Making Us Count

  http://www.learningdisabilities.org.uk/our-work/children-and-young-people/making-us-count/£gap

  North Somerset Social Services Department (2007) Fulfilling Lives. (Unpublished report on consultation exercise in North Somerset).

  SCIE (2005) Knowledge review 14: Having a good day? A study of community-based day activities for people with learning disabilities http://www.scie.org.uk/publications/knowledgereviews/kr14.asp

  Skills for Support Team (2007) Skills for Support: a new kind of support. To be published by Kidderminster, BILD.

  Williams, V., Abbott, D., Rodgers, J., Ward, L. and Watson, D. (2007) Money, Rights and Risks: a scoping study (To be published: Friends Provident).